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PSYCHIATRY NURSING JOURNAL
(Jurnal Keperawatan Jiwa)
Vol. 1, No. 1, Maret 2019

Laman Jurnal: https://e-journal.unair.ac.id/PNJ

PENGARUH PROGRAM PARENTING DALAM MENGURANGI STRES ORANG


TUA DENGAN ANAK AUTIS
(Effects of Parenting Programs on Reducing Parent Stress with Autism)

Andikawati Fitriasari1, Ah Yusuf2, Nurilla Kholidah2


1 Fakultas Keperawatan dan Kebidanan, Universitas Nahdhatul Ulama Surabaya, Indonesia
2 Fakultas Keperawatan Universitas Airlangga, Indonesia

ABSTRAK
RIWAYAT ARTIKEL
Diterima: 04 Desember 2019 Pendahuluan: Pola asuh orang tua sangat berpengaruh terhadap pertumbuhan dan
Disetujui: 23 Desember 2019 perkembangan anak, apalagi jika pada anak mengalami autis. Umumnya orang tua yang
memiliki anak autis mengalami stres, oleh karena itu bagaimana program pemberian
parenting sangat penting dikaji agar orang tua dapat memperlakukan anak autis dalam
KONTAK PENULIS mencapai perkembangan optimalnya. Systematic review ini bertujuan untuk menjelaskan
pengaruh program parenting dalam mengurangi stres orang tua dengan anak autis.
Ah Yusuf
yusuf_fkp_unair@yahoo.co.id Metode: Pencarian jurnal dilakukan pada database Scopus dan Sience Direct, pembatasan
Fakultas Keperawatan, jurnal pada 10 tahun terakhir mulai 2008-2017, area jurnal Nursing, Psychologi, Disabilitas,
Universitas Airlangga Child, dan Psychiatri dengan kata kunci Parenting, Parent Stress and Autism. Prosedur
seleksi dan ekstraksi data menggunakan pendekatan PICOT.
Hasil: Total keseluruhan partisipan dari seluruh penelitian yang diriview adalah 2107
dengan orangtua yang mengalami kecemasan atau stress akibat memiliki anak autis.
Intervensi yang digunakan dalam semua penelitian adalah intervensi program parenting
dan support parenting. Rerata durasi interfensi selama 3 minggu dengan rerata follow up
12 bulan. Efek signifikan ditemukan secara statistik dari program parenting atau support
parenting untuk hasil pasca pemberian intervensi hingga follow up. Hasil yang signifikan
ditemukan pada pemberian program parenting melalui media konseling peneliti di
dampingi oleh terapis yang bersertifikat.
Kesimpulan: Parenting memiliki pengaruh yang signifikan dalam menurunkan stres pada
orang tua yang memiliki anak autis.
Kata Kunci
parenting; parents; stress; autism.

ABSTRACT
Introduction: Parenting is very influential in the growth and development of children,
especially if the child has autism. Generally, parents who have autistic children experience
stress, therefore how the parenting program is very important to be studied so that parents
can treat autistic children in achieving optimal development. This Systematic review aims
to explain the effect of parenting programs in reducing the stress of parents with autistic
children.
Method: The journal search was conducted on the Scopus and Science Direct databases,
journal restrictions in the last ten years starting 2008-2017, the journal areas of Nursing,
Psychology, Disability, Child, and Psychiatry with the keywords Parenting, Parent Stress and
Autism. Data selection and extraction procedures use the PICOT approach.
Results: The total number of participants from all studies reviewed was 2107, with parents
experiencing anxiety or stress due to having an autistic child. The interventions used in all
research were parenting program interventions and parenting support. The average
duration of intervention was three weeks with a mean follow-up of 12 months. Significant
effects were found statistically from parenting programs or parenting support for outcomes

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D. CAESARIA ET AL.

post-intervention until follow-up. Significant results were found in parenting programs


through researchers' counseling media accompanied by certified therapists.
Conclusion: Parenting has a significant effect on reducing stress in parents who have
autistic children.
Keywords
parenting; parents; stress; autism.

Kutip sebagai: Fitriasari, A., Yusuf, A., & Kholidah, N. (2019). Pengaruh Program Parenting dalam
Mengurangi Stres Orang Tua dengan Anak Autis. Psych. Nurs. J., 1(1).

1. PENDAHULUAN berbagai upaya yang telah dilakukan


untuk memberikan metode parenting
Pola asuh orang tua sangat berpengaruh
pada orang tua dengan anak autis,
terhadap pertumbuhan dan perkembang-
diantaranya intervensi memberikan
an anak, apalagi jika pada anak mengalami
perhatian penuh pada anak dengan
autis. Umumnya orang tua yang memiliki
memberikan koping yang positif pada
anak autis mengalami stress (Iadarola et
orang tua dengan anak autis, selain itu ada
al., 2017). Tingkat stress pada ayah dan ibu
juga program dukungan parenting pada
berbeda, (Hill-chapman, Herzog and
orang tua dengan anak autis. Systematic
Maduro, 2013). Stress ayah disebabkan
review ini bertujuan menjelaskan
faktor kognitif anak, sedangkan ibu pada
pengaruh program parenting dalam
faktor disfungsi eksekutif dan sensorik
menurunkan stress orang tua dengan anak
anak. Tingkat stress pada ibu jauh lebih
autis.
tinggi dibandingkan ayah, hal inilah yang
menjadi pemicu orang tua kurang keahlian
2. METODE
dalam memahami anak autis (García-
lópez, Sarriá and Pozo, 2016). Strategi Pencarian
Stress orang tua menyebabkan Strategi pencarian yang digunakan dalam
kurangnya kemampuan orang tua dalam penyusunan systematic review ini diawali
memberikan pola asuh pada anak autis. dengan pemilihan topik, kemudian
Kesulitan utama adalah ibu sulit ditentukan kata kunci. Kata kunci yang
memahami anak autis dan apa yang digunakan adalah Parenting, AND Parent
seharusnya mereka lakukan (Craig et al., Stress AND Autism. Pencarian jurnal
2016). Berbagai gangguan komplek pada dilakukan pada database Scopus dan
anak autis seperti gangguan sensori, Sience Direct, pembatasan hasil jurnal
berbahasa, koordinasi motorik, emosional, pada 10 tahun terakhir mulai 2008-2017,
perilaku dan sebagainya tidak hanya area jurnal Nursing, Psychologi,
mempengaruhi orang tua, tetapi juga Disabilitas, Child, dan Psychiatri.
mempengaruhi bagaimana orang Saat pencarian menggunakan kata
tua harus berinteraksi dengan anak autis. kunci diatas dengan pembatasan yang
digunakan didapatkan 225 jurnal yang
Oleh karena itu orang tua selayaknya
terkait. Penulis melakukan pencarian
memperoleh bantuan bagaimana mereka
referensi online pada Scopus dan Science
seharusnya memberikan pola asuh yang
Direct dengan kata kunci Parenting, Parent
baik, sehingga orang tua dan anak mampu Stress and Autism didapatkan hasil
berinteraksi dan berkomunikasi secara sebanyak 225 artikel (120 dari Scoopus
efektif. (Yu et al., 2016). dan 105 dari Science Direct). Sebanyak 38
Beberapa peneliti memberikan artikel duplikasi yang ditemukan, sehingga
solusi sederhana berupa pemberian 32 artikel yang dilakukan skrining. Setelah
prorgram parenting pada orang tua. Gambar. Alur pemilihan artikel yang
Penelitian tentang penanganan untuk digunakan
menurunkan stress pada orang tua dalam
memberikan pola asuh pada anak autis. melakukan skrining dengan review
Beberapa penelitian juga menyebutkan abstrak, didapatkan 19 artikel. Kemudian

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JURNAL NERS

Pencarian artikel melalui


Comparisson: peserta diacak setidaknya
I
database (n=225) satu kelompok kontrol dengan kondisi
d
e
non-intervensi, misalnya kelompok
n Scopus (= 120), Science Direct control wait list.
t (n=105) Output: data pra dan pasca intervensi
untuk kedua intervensi dan kontrol untuk
Artikel duplikasi
satu atau lebih hasil terkait parenting,
dihapus (n=38) termasuk hasil utama dari Parental Stress
Index (PSI), Parenting sense of efficacy,
ECBI- IS Intensity Scale” (IS) and the ECBI-
Problem Scale” (PS), Parenting Sense of
S Review Abstrak Competence Scale (PSOC) dan Aparenting
k efficacy subscale (PSOC-Efficacy.
r (n=19)
i Desain studi
n Randomized control trials (RCT).
Artikel yang tidak
masuk kriteria (n=4) 3. HASIL
Karakteristik Studi
K Total keseluruhan partisipan dalam artikel
Review Full-Text
e yang diriview adalah 2107 orang tua,
l
(n=18) mengalami kecemasan atau stress akibat
a
memiliki anak autis. Intervensi yang
y
a digunakan dalam semua penelitian adalah
intervensi program parenting dan support
Artikel yang tidak
masuk kriteria (n=3) parenting. Rerata durasi interfensi selama
3 minggu dengan rerata follow up 12
bulan. Dari semua penelitian sebagian
Artikel yang digunakan
besar menggunakan alat ukur yang sama
(n=15) yaitu: Parental Stress Index (PSI), Parenting
dilakukan review kembali terhadap isi sense of efficacy, ECBI- IS Intensity Scale”
keseluruhan artikel dan yang masuk (IS) and the ECBI-Problem Scale” (PS),
kriteria adalah sebanyak 15 artikel. Parenting Sense of Competence Scale
(PSOC) dan Aparenting efficacy subscale
(PSOC-Efficacy).
Prosedur seleksi dan ekstraksi data
Kelayakan studi dinilai dengan Efek Post-treatment
menggunakan pendekatan PICOT
Efek signifikan ditemukan secara statistik
(terlampir).
dari program parenting atau support
parenting untuk hasil pasca pemberian
Populasi intervensi hingga follow up. Hasil yang
Populasi penelitian orang tua, keluarga signifikan ditemukan pada pemberian
yang memiliki anak autism. program parenting melalui media
konseling peneliti di dampingi oleh terapis
Intervensi
1. Intervensi Program Parenting multi yang bersertifikat
komponen untuk orang tua yang
memiliki anak autis, termasuk
kombinasi dua atau lebih elemen 4. PEMBAHASAN
biasanya dianggap sebagai bagian dari Review dari beberapa penelitian
program parenting (Stress, Ansietas, menunjukkan bahwa penerapan dari
Behavior, Cognitif, Autism)
parenting program untuk mengurangi
2. Program Support Parenting (Stress,
stress dan kecemasa pada orang tua,
Ansietas, Behavior, Cognitif, Autism)

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D. CAESARIA ET AL.

parenting menunjukkan hasil yang melibatkan orang tua. Program ini


signifikan terhadap pre dan post outcame dikembangkan untuk mengatasi masalah
yaitu Parental Stress Index (PSI), Parenting spesifik pada anak autis, bertujuan untuk
sense of efficacy, ECBI- IS Intensity Scale” memperbaiki tingkah laku sosial dan
(IS) and the ECBI-Problem Scale” (PS), meningkat bahasa, serta untuk
Parenting Sense of Competence Scale mengurangi perilaku yang tidak pantas,
(PSOC) dan Aparenting efficacy subscale setelah di lakukan pemberian oleh terapis
(PSOC-Efficacy). Hasil yang ditunjukkan menghasilkan hasil yang lebih baik untuk
adanya pengaruh parenting pada orang anak autis dengan cara memfollow-up
tua dan adanya perubahan tingkat stress, dibanding pengobatan klinik saja
depresi dan kecemasan. (Whittingham et al., 2009b).
Program parenting dan Selain itu program terbaru yaitu
pendidikan orang tua untuk orang tua Co-parenting mengacu pada bagaimana
yang memiliki anak autis secara konsisten orang tua berhubungan dengan satu lain
menunjukkan hasil yang positif untuk secara khusus dalam peran mereka
kedua orang tua dan anak-anak, Bagi sebagai orang tua. Positif co-parenting
orang tua, program parenting berdampak umumnya dianggap mencakup
langsung pada pengetahuan, keterlibatan timbal balik, dan dukungan
keterampilan, dan kinerja dan efek yang konsisten di antara pengasuh anak.
samping dari penurunan stres dan konflik Konsep ini telah dipelajari terutama dalam
perkawinan serta membawa efek positif keluarga dengan anak-anak yang biasanya
pada orang tua (Kuravackel et al., 2017). berkembang co-parenting mulai
Sebagian besar intervensi program diterapkan pada bagaimana orang tua
parenting (PT) telah dirancang untuk dengan anak autis bekerja satu sama lain
mengajari orang tua dalam menerapkan dalam mengasuh anak. (Thullen and
strategi spesifik yang terfokus pada Bonsall, 2017).
dukungan dan anak. Beberapa penelitian Program Parenting yang lainnya
telah mengevaluasi intervensi pelatihan seperti CBT prorgram CBT dapat
program parenting orang tua,dimana mempengaruhi dan menurunkan
intervensi dirancang terutama untuk kecemasan orang tua, dan dapat membuat
kepentingan orang tua dalam memusatkan dukungan terhadap orang tua dan dapat
perhatian pada anak dengan autism mengontrol secara positif, mengontrol
spectrum disorder (Hemdi and Daley, kecemasan dan stress pada orang tua
2017). dapat mempengaruhi perbaikan dalam
Beberapa parenting program pola asuh merawat anak dengan autism
telah dikembangkan untuk mengajarkan spectrum disorder. Orang tua juga
keterampilan baru, mengatasi defisit melaporkan bahwa keterlibatan dalam
keterampilan, atau mengurangi perilaku perawatan anak-anak dapat membantu
yang mengganggu dari anak autis, Studi mereka merasa lebih kompeten dalam
pada PT untuk anak autis dan perilaku membantu anak mereka (Maughan and
mengganggu telah menunjukkan Weiss, 2017). Setelah di berikan program
penurunan pada anak yang mengalami parenting terdapat adanya perubahan
ganggupan perilaku (Iadarola et al., 2017). yang signifikan antara stress ayah dan ibu
Strategi mengasuh anak pada orang tua setelah pemberian parenting pola asuh
yang memiliki anak autis, program denga hasil (stress :39%, p<0.001;
parenting dapat mempengaruhi anak, anxiety:26%, p<0.001, depression: 31%,
anak cenderung dapat terkendali selain itu p<0.001,well-being:44%, p<0.001)
program parenting dikaitkan dengan gaya (García-lópez, Sarriá, & Pozo, 2016).
pengasuhan dan hasil dalam perawatan Sedangkan untuk Model LDS
kesehatan anak berkembang'' permulaan mengkonfirmasi temuan dari efek
''dari model hubungan antara keterlibatan campuran model linier yang digunakan
orang tua dalam perawatan kesehatan oleh orang tua di kedua kelompok
anak. (Whittingham et al., 2009a). perlakuan perubahan signifikan dalam
Program parenting yang spesifik, kompetensi dari awal sampai minggu 12

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JURNAL NERS

(PT: β = .68, p <.001; PEP: β = .49, p orang tua yang memiliki anak autism
<.001).dan hasil dari program Training spectrum disorder yang di berikan oleh
Parenting di dapatkan Hasil ini pada terapis. Hal ini dapat dijadikan acuan
tindak lanjut (T = 1,50; z = 3,20; P <. 001) untuk penelitian selanjutnya yang
(Ilg et al., 2016). disesuaikan dengan kriteria orang tua
Adanya perubahan tingkat stress yang mengalami stress saat memberikan
pola asuh pada anak autism spectrum
pada orang tua setelah di berikan program
disorder di Indonesia.
parenting (F[2,30] = 3,69; P <.05). ada
peningkatan keterampilan sosialisasi pada
anak (2F = 20,26; (P <.001), dan untuk 7. DAFTAR PUSTAKA
hasil Co-Parenting Program di dapatkan
hasil pada tingkat stress pre dan post co Craig, F. et al. (2016) ‘Parenting stress
program adalah PSI (P<0,001) (Thullen & among parents of children with
Bonsall, 2017) dan untuk Program Neurodevelopmental Disorders’,
parenting terdapat efek univariat yang Psychiatry Research. Elsevier, 242,
signifikan dengan Orang tua di kelompok pp. 121–129. doi:
perlakuan melaporkan penurunan 10.1016/j.psychres.2016.05.016.
masalah pada anak dengan perilaku, ECBI García-lópez, C., Sarriá, E. and Pozo, P.
skala, F (1,57) = 19,81, p <0. 001, η2 = 0,26 (2016) ‘Research in Autism
dan ECBI skala masalah, F (1, 57) = 10.93, Spectrum Disorders Multilevel
p <0. 002, η2 = 0,16.Skala Parenting approach to gender differences in
termasuk Skala Laxness,F (1,57) = 15.85, p adaptation in father-mother dyads
<0,001, η2 = 0,22, reaktifitas lebih skala, F parenting individuals with Autism
(1, 57) = 19,14, p <0,001, η2 = 0,25 dan
Spectrum Disorder’, Research in
Verbositas Skala, F (1, 57) = 10.72, p <0,01,
Autism Spectrum Disorders.
η2 = 0,16 (Whittingham, Sofronoff,
Elsevier Ltd, 28, pp. 7–16. doi:
Sheffield, & Sanders, 2009).
10.1016/j.rasd.2016.04.003.
Hemdi, A. and Daley, D. (2017) ‘The
5. IMPLIKASI Effectiveness of a Psychoeducation
Intervention delivered via
Hasil dari review berbagai penelitian
WhatsApp for mothers of children
dapat diimplikasikan dalam ranah
with Autism Spectrum Disorder
keperawatan jiwa. Yang mana program
(ASD) in the Kingdom of Saudi
parenting dapat menjadi pertimbangan
Arabia: A randomized controlled
dan pengembangan terapi yang dapat di
trial’, Child: Care, Health and
gunakan oleh ners spesialis. Adanya
Development, 43(6), pp. 933–941.
program parenting dengan berbagai jenis
doi: 10.1111/cch.12520.
terapi dapat dijadikan sebuah inovasi
Hill-chapman, C. R., Herzog, T. K. and
dalam intervensi keperawatan khususnya
Maduro, R. S. (2013) ‘Research in
keperawatan jiwa. Namun dalam
Developmental Disabilities
pengaplikasiannya di Indonesia perlu
Aligning over the child : Parenting
dilakukan penelitian lebih lanjut dengan
alliance mediates the association of
menyesuaikan karakteristik klien yang
autism spectrum disorder
ada di Indonesia.
atypicality with parenting stress’,
Research in Developmental
Disabilities. Elsevier Ltd, 34(5), pp.
1498–1504. doi:
6. KESIMPULAN 10.1016/j.ridd.2013.01.004.
Iadarola, S. et al. (2017) ‘Teaching Parents
Penelitian menunjukkan bahwa
Behavioral Strategies for Autism
pemberian program parenting memiliki
pengaruh yang signifikan terhadap Spectrum Disorder (ASD): Effects
perubahan pola asuh, dan stress pada on Stress, Strain, and Competence’,

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D. CAESARIA ET AL.

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| Volume 1 No 1 MARET 2019


PSYCIATRY NURSING JOURNAL

Lampiran 1 Hasil Review Artikel


STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME
Effectiveness Of Sebanyak 187 Data Hasil Semua data Peneliti
Mindfullness- sampel, di mana Demography, The signifikansi demography an ini di
Based jumlah sampel World Health antara signifikan dan hasil lakukan
Interventions setelah Organization QOL efektifitas uji t sampel selama
On Quality Of rendomize, Assessment-Brief mindfull berpasangan 3
Life And kelompok (WHOQOL-BREF) positive of live menunjukkan bahwa minggu
Positive perlakuan untuk mengukur pada orangtua perbedaan rata-rata
Repparaisal sebanyak (n:62) kesehatan fisik, anak autis dan antara skor pretest
Copping dan kontrol psikologis, ada perubahan dan post test. Analisis
Among Parents (n:58) namun kesehatan kesehatan data juga
Of Childern dalam lingkungan,dan hubungan menunjukkan bahwa
With Autism pertengahan hubungan sosial, sosial, skor PSR dan
Spectrum penelitian The positive kesehatan mindfulness secara
Disorder hanya tersisa stress reappraisal hubungan signifikan lebih tinggi
(Rayan and 104 partisipan subscale of the psikologis dan pada post test
Ahmad, 2016) 52 sampel Cognitive nilai kesadaran dibandingkan dengan
kelompok Emotion orang tua pretest [untuk skor
perlakuan yang Regulation PSR: t (51) = 3,45, p =
terdiri dari 15 Questionnaire 0,001, Cohen d = 0,48
ayah dan 37 ibu, (CERQ) untuk (ukuran efek
sedangak untuk strategi ko[ing sedang), dan untuk
kelompok cognitiv, The nilai perhatian: t (51)
kontrol Mindful Attention = 6,31, p> 0,001,
terdapat 52 Awareness Scale Cohen d = 0,87 dan
sampel yang (MAAS) untuk dapatkan hasil
terdiri dari 16 mengukur skala (p<0,0001) di mana
ayah dan 36 ibu kesadaran orang ada perubahan
tua, The MBI kesehatan hubungan
program, sebuah sosial, kesehatan
program untuk hubungan psikologis
mengetahui dan nilai kesadaran
tingkat stress orang tua, sedangkan
orang tua, dan untuk kelompok
mindful pola asuh kontrol memberikan
orangtua dengan efek yang kecil dan
anak ASD tingkatan signifikan
kurdang dari 0,005
sehingga dapat di
simpulkan efektifitas
mindfull positive of
live pada orangtua
anak autis
Parents On The Sebanyak 346 The Autism Hasil yang Pada nilai AQ total, Tidak di
Autism : Links sampel Spectrum signifikan ada efek utama yang sebutka
With Parenting orangtua yang Quotient (AQ) antara signifikan untuk AS n waktu
Efficacy mempunyai untuk mengukur kelompok Ddiagnosis, F (2340) penelitia
(Yu et al., anak dengan asd pada anak, kontrol dan = 46,18, p <.001, h2 = n
2016) diagnosa ASD, Parenting sense of perlakuan .214.Pengujian
pada penelitian efficacy untuk terdapat perbedaan kelompok
ini peneliti mengukur pola efektifitas menyatakan bahwa
membagi 3 asuh orang tua dalam total skor AQ adalah

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D. CAESARIA ET AL.

STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


kelompok pada anak, DSM meningkatkan kelompok utama
penelitian, yaitu IV-TR untuk pola asuh pada Group1, diikuti oleh
kelomop 1 dan mengukur orangtua yang Group2, kemudian
2 merupakan kecemasan dan memiliki anak Group3, dengan
kelompok stress pada orang ASD tingkat signifikan p
perlakuan dan tua <.001 untuk
kelompok 3 perbandingan
merupakan masing-masing
kelompok pasangan.
kontrol, dalam
penelitian ini
kelompok
perlakuan 109
orangtua (29
ayah dan 80
ibu), kelompok
2 (31 ayah dan
97 ibu) dan
kelompok 3 (22
ayah dan 87
ibu)
An Evaluation Sebanyak 67 ECBI- IS Intensity Hasil signifikan Hasil penelitian ini Septemb
Of The Cygnet sampel yang di Scale” (IS) and the yang terjadi terdapat peningkatan er 2009
Parenting bagi jumlah ECBI-Problem antara perbaikan pola asuh - Mei
Support sampel Scale” (PS) untuk kelompok orang tua denga 2010,
Programme perlakuan n 35 mengukur kontrol dan anak autism penelitia
For Parents Of orang tua dan behavior dan perlakuan spectrum disorder n ini di
Childern With kontrol 32 masalah pada . T0G dan T2, dan lakukan
Autism orang tua, orang tua, The T0G dan T3 (p 3 bulan
Spectrum Parenting Sense of <0,05). Hal yang pertama,
Disorder Competence Scale sama terjadi di kemudia
(Stuttard et al., (PSOC) dan antaraT2 danT3 n di
2016) Aparenting follow
efficacy up 6
subscale(PSOC- bulan
Efficacy) untuk setelah
mengukur skala di
pola asuh orang berikan
tua interven
si
Living With Sebanyak 76 The Eyberg Hasil signifikan Terdapat perubahan Septemb
Autism or sampel ChildBehaviourIn adanya signifikan terhadap er 2009
Disability-An kelompok ventory (ECBI) pengaruh dari pola asuh orang tua sampai
Evaluation of a perlakuan untuk mengetahui intervensi pada kelompok yang novemb
Parenting terdapat 48 seberapa beasar terhadap pola memiliki intervensi er 2010,
Support orang tua, dan orang tua respect asuh orang tua PSOC (p<.001) lama
Intervention kelompok dengan anknya, yang memiliki penelitia
For Parents Of kontrol 28 Intensity Scale” anak autis n ini 1,5
Disabled orang tua (IS) and the mapun tahun
Children Problem Scale” disaabilitas.
(Stuttard et al., (PS) untuk
2014) mengukur

| Volume 1 No 1 MARET 2019


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STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


behavior dan
masalah pada
orang tua, The
Parenting Sense of
Competence Scale
(PSOC) dan
Aparenting
efficacy
subscale(PSOC-
Efficacy) untuk
mengukur skala
pola asuh orang
tua
Multilevel Sebanyak 240 Childhood Autism Hasil signifikan Adanya perubahan Tidak di
Apporoach To sampel Rating Scale adanya yang signifikan sebutka
Gender orangtua (CARS) untuk pengaruh dari antara stress ayah n waktu
Difference In dengan rata- mengukur skala pola asuh ayah dan ibu setelah penelitia
Adaptation In rata usia 28-72 autis pada anak, dan ibu, dan pemberian parenting n
Father-Mother tahun, dengan Behavior adanya pola asuh denga hasil
Dydas mempunyai Problems perbedaan (stress:39%,
Parenting anak biologis Inventory (BPI) tingkat stress p<0.001;anxiety:26%
Individuals dengan rata- untuk mengukur antara ayah dan , p<0.001,depression:
With Autism rata usia 3-38 pengetahuan ibus setelah di 31%, p<0.001,well-
Spectrum tahun dengan orang tua, berikan being:44%, p<0.001)
Disorder diagnosa autism Aberrant parenting
(García-lópez, spectrum Behavior dalam
Sarriá and disorder. Checklist (ABC) mengasuh anak
Pozo, 2016) untuk mengukur dengan autis
pengetahuan dan
stress pada orang
tua, Stress Index
Short Form
(PSI/SF),untuk
mengukur stress
orang tua

Teaching Sampel The Autism Adanya Model LDS Septemb


Parents sebanyak 180 Diagnostic perubahan yang mengkonfirmasi er, 2010
Behavioral anak autism Observation signifikan temuan dari efek sampai
Strategies for spectrum Schedule (ADOS) antara campuranmodel Februar
Autism disorder untuk mengukur kelompok linier yang digunakan y, 2014.
Spectrum dengan orang autism spectrum perlakuan dan oleh orang tua di
Disorder (ASD): tua disoreder, kontrol dan kedua kelompok
Effects on Parenting Sense of adanya perlakuanperubahan
Stress, Strain, Competence pengaruh signifikan dalam
and (PSOC) untuk teaching kompetensi dari awal
Competence mengukur pola parenting sampai minggu12
(Ilg et al., asuh orang tua, behavioral pada (PT: β = .68, p <.001;
2016) Aberrant orang tua dalam PEP: β = .49, p <.001).
Behavior melakukan pola
Checklist (ABC), asuh dengan

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D. CAESARIA ET AL.

STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


untuk mengukur anak autism
pengetahuan spectrum
orang tua, Parent disorder
Training (PT)
untuk mengukur
latihan pola asuh,
Psychoeducation
Program (PEP)
untuk mengulur
psyko edukasi
orang tua,
Treatment Effects
untuk mengukur
efek dari
pemberian terapi,
Parenting Stress
Index-Short Form
(PSI) untuk
mengukur tingkat
stress pada orang
tua
Parental Peserta Parent Expressed Hasil signifikan CERQ dikaitkan Tidak di
Outcomes termasuk 57 Emotion untuk adanya dengan peningkatan sebutka
Following orang tua mengukur perubahan pada yang lebih besar n waktu
Participation (80,7% ibu) ekspresi orang tua anak dengan BASC-2 penelitia
in Cognitive anak dengan saat berbicara hasil CGI-S yang menginternalisasi n
Behavior ASD (91,2% dengan anak mengalami masalah (r = .49, p
Therapy for laki-laki). Setiap autism spectrum perubahan <.001) dan Nilai CGI-
Children with anak memiliki disorder, setelah orang S (r = .31, p = .03).
Autism satu orang tua Parenting tua di beri Perubahan yang
Spectrum menghadiri sesi Approaches untuk terapi CBT lebih besar dalam hal
Disorder terapi dan mengetahui pola negatif Pola asuh
(Maughan and orang tua yang asuh dan pada Parenting Scale
Weiss, 2017) berpartisipasi pendisplinan terkait
selesai ukuran orang tua pada denganperbaikan
penelitian. anak, dalam
Anak-anak Interpersonal menginternalisasi
berusia 8-12 Mindfulness in masalah (r = .36, p =
tahun umur Parenting Scale .01)
(IEM-P) untuk
mengukur domain
pengetahuan dan
cognitif orang tua,
Parent Mental
Health
(Depression
Anxiety Stress
Scale) untuk
mengetahui
tingkatkecemasan
dan stress orang
tua, Cognitive

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Emotion
Regulation
Questionnaire
(CERQ) untuk
mengetahui
kognitif emosi
pada orang tua,
Child Mental
Health Behavior
Assessment Scale
for Children—2nd
Edition
Child (BASC 2),
Clinical Global
Impression Scale
The Clinical
Global
Impression Scale
Severity and
Improvement
(CGI-S and
CGI-I untuk
mengetahui
kecemasan dan
stress pada anak
COMPASS for Sebanyak 33 Modified Checklist Hasil signifikan Hasil menunjukkan Penelitia
Hope: keluarga (66 for Autism in adanya bahwa saat di n ini di
Evaluating the orang tua) yang Toddlers perubahan pada berikan terapi semua lakukan
Effectiveness of memiliki anak (M‑CHAT untuk anak dan orang peserta sebanyak (N selama 8
a Parent dengan autism mengukur autis tua setelah di = 33), terdapat minggu
Training and spectrum pada anak usia 1- berikan support peningkatan
Support disorder 3 tahun, Social program signifikan pra-pasca
Program for Communication pemberian terapi
Children with Questionnaire perilaku anak dari
ASD (SCQ) untuk pretest (M = 133,48,
(Kuravackel et mengukur SD = 29,32) sampai
al., 2017) komunikasi pada post test (M =
anak, Autism 118,58,SD = 29,90),
Diagnostic Wald (1) = 14,08, p
Observation <.001, d = 0,18.
Schedule 2 dengan hasil orang
(ADOS‑2;McCrim tua, pre-post setelah
mon and Rostad) di berikan terapi
untuk mengukur kompetensi orang
diagnostik autism tua (M = 64,22,SD =
pada anak, 13.77); (M = 67,79,
Parental Stress SD = 10.90), [Wald
Index (PSI) untuk (1) = 5.11,p = 0,02, d
mengukur tingkat = 0,12]; dan pada
stress pada orang nilai stres induk (M =
tua, Eyberg Child 103,78,SD = 23.90)
Behavior (M = 95.72, SD =

http://e-journal.unair.ac.id/PNJ |
D. CAESARIA ET AL.

STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


Inventory (ECBI 17.66), Wald (1) =
untuk mengukur) 13.46,p <.001, d =
masalah 0,13.
pengetahuan
orang tua dengan
anak autism,
Being a Parent
Scale (BPS) untuk
mengukur gaya
pola asuh orang
tua dengan anak
autism, Vineland
Adaptive Behavior
Scale, 2nd edition
(VABS‑II) untuk
mengukur
pengetahuan yang
adaptiv,
Consultation
Satisfaction
Questionnaire
untuk mengukur
satisfacation
quasioner, Group
Session Rating
Scale (GSRS)
untuk mengkukur
skala terapi yang
di berikan
Evaluation of a Sebanyak 58 Social validity Hasil signifikan Adanya perubahan Penelitia
French parent- orang tua yang measures untuk pada tingkat yang signifikan n ini di
training menjadi sampel mengukur pengetahuan, terhadap tingkat lakukan
programin pada penelitian valilditas sosial, tingkat stress, pengetahuan orang selama 2
young children ini The French Beck dan tua terhadap anak tahun
with autism Depression keterampilan autisme dan strategi sejak
spectrum Inventory-short sosial pada anak perilaku meningkat septemb
disorder form (BDI-SF) pasca program dari pra sampai er 2012
(Ilg et al., untuk mengukur french pasca pprogram sampai
2016) tingkat depresi parenting parenting (T = 0,00; septemb
orang tua, The z = 3,30; P <.001). er 2014
French Parent Hasil ini
Stress Index (PS I) dipertahankan pada
untuk mengukur tindak lanjut (T =
tingkat stress 1,50; z = 3,20; P <.
orang tua, Family 001). adanya
quality of life is perubahan tingkat
evaluated by the stress pada orang tua
French adaptation setelah di berikan
of the Beach program parenting
Center Family (F[2,30] = 3,69; P
Quality of Life <.05). ada
Scale (FQOL) peningkatan

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PSYCIATRY NURSING JOURNAL

STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


untuk mengukur keterampilan
kualitas adaptasi sosialisasi pada anak
orang tua, The (2F = 20,26;
Autism Spectrum (P <.001).
Disorder-
Behavior
Problems for
Children (ASD-
BPC), untuk
mengukur
masalah autism
pada anak, The
Vineland Adaptive
Behavior Scales
Iuntuk mengukur
skala
pengetahuan
adaptasi
Co-Parenting Sebanyak 113 Parenting Stress Hasil signifikan Usia rata-rata Penelitia
Quality, orang tua Inventory Fourth pada tingkat responden adalah n ini di
Parenting dengan anak Edition Short pengetahuan, 39,9 tahun (SD = lakukan
Stress, and asd yang Form (PSI) untuk tingkat stress 6,8),90% adalah sejak
Feeding berusia antara mengukur tingkat pada orang tua sosok ibu anak July-
Challenges (5-13 tahun) stress pada orang setelah di (biologis, langkah- Agustus
in Families tua, Co-parenting berikan Co- ,grand-, atau 2015
with a Child quality was Parenting adoptive), dan 86%
Diagnosed with assessed using adalah co-residing
Autism The Coparenting dan menikah ke co-
Spectrum Relationship Scale parent. Usia rata-rata
Disorder (CRS) untuk anak itu adalah 9,5
(Thullen and mengukur tahun(SD = 2,5) hasil
Bonsall, 2017) hubungan pola pada tingkat stress
asuh pada orang pre dan post co
tua dengan anak program adalah
autism, Brief (P<001)
Autism Mealtime
Behavioral
Inventory
(BAMBI) untuk
mengukur
pengetahuan
orang tua

Stepping Sebanyak 59 Family Hasil signifikan Induk yang Penelitia


Stones Triple P: sampel keluarga Background pada tingkat dilaporkan Perilaku n ini di
An RCT of a (118 Orang tua Questionnaire, pengetahuan, Anakmengungkapka lakukan
Parenting dengan anak Eyberg Child dan program n efek multivariat selama 6
Program ASD) Behaviour parenting pada yang signifikan, F bulan
with Parents of Inventory (ECBI), orang tua yang (2,56) = 10,46,p
a Child Parenting Scale memiliki anak <0.001, η2 = 0,27.
autism Efek univariat yang

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D. CAESARIA ET AL.

STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


Diagnosed with (PS), Being a spectrum signifikan dengan
an Autism Parent Scale disorder Orang tua di
Spectrum kelompok perlakuan
Disorder melaporkan
(Whittingham penurunan masalah
et al., 2009b) pada anak dengan
perilaku, ECBI skala,
F (1,57) = 19,81, p
<0. 001, η2 = 0,26
dan ECBI skala
masalah, F (1, 57) =
10.93, p <0. 002, η2 =
0,16.Skala Parenting
termasuk Skala
Laxness,F (1,57) =
15.85, p <0,001, η2 =
0,22, reaktifitas
lebihSkala, F (1, 57) =
19,14, p <0,001, η2 =
0,25 dan Verbositas
Skala, F (1, 57) =
10.72, p <0,01, η2 =
0,16
Do parental Sebanyak 59 Family Hasil signifikan Adanya perubahan Pada
attributions sampel keluarga Background pada tingkat signifikan penurunan penelitia
affect (118 Orang tua Questionnaire, pengetahuan, reaktivitas n ini
treatment dengan anak Eyberg Child dan program berlebihan orang tua waktu
outcome in a ASD) Behaviour parenting pada yang diukur dengan penelitia
parenting Inventory (ECBI), orang tua dan skor perbedaan pada n tidak
program? An Parenting scale, memberikan sub skala over- di
exploration of Parental efek pada reactivity dari skala jelaskan
the effects of Attribution parental parenting, R = .75, F
parental Questionnaire (9,39) = 5,49, p
attributions in (PAQ) <0.001. dan
an RCT of pengetahuan orang
Stepping tua p<0, 001
Stones
Triple P for the
ASD population
(Whittingham
et al., 2009a)
Parenting Sebanyak 239 Assessment Hasil signifikan Terdapat hasil yang Penelitia
stress among oran tua yang included the pada terdapat signifikan parenting n ini di
parents of memiliki anak administration of perubahan stress, parenting lakukan
children with dengan IQ test and clinical stress setelah di stress father mother desembe
Neurodevelop neurodevlopme standardized berikan di dapatkan hasil r 2014
mental ntal disorder scales such as the, parenting pada (p<0,001) sampai
Disorders Parenting Stress orang tua desembe
(Craig et al., Index (PSI) and r 2015
2016) Child Behavior
Checklist (CBCL).

| Volume 1 No 1 MARET 2019


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STUDY POPULASI INSTRUMEN COMPARASI OUTCOME TIME


The Sebanyak 62 Parents' Hasil signifikan Terdapat hasil yang Penelitia
Effectiveness of sampel ibu yang demographic dalam signifikan n ini
a memiliki anak questionnaire , pemberian psychoedukasi ibu di tidak
Psychoeducatio autism Parent Stress psikoedukasi dapatkan hasil menjela
n Intervention spectrum Index Short Form ibu yang (p<0,001) skan
delivered disorder (PSI‑SF), Hospital memiliki anak waktu
via WhatsApp Anxiety and dengan autism peneliti
for mothers of Depression Scale spectrum an
children with (HADS), Strength disorder
Autism and Difficulties
Spectrum Questionnaire
Disorder (ASD) (SDQ)
in the Kingdom
of Saudi
Arabia: A
randomized
controlled trial
(Hemdi and
Daley, 2017)
Aligning over Sebanyak 56 The Parenting Hasil signifikan Menunjukkan Waktu
the child: orang tua yang Stress Index-Short dalam mediasi signifikansi penelitia
Parenting memiliki anak Form (PSI), The parenting parenting pada orang n ini
alliance autism Behavior sehingga dapat tua dalam mengasuh tidak di
mediates the spectrum Assessment mempengaruhi anak, X2 = 6,99, df = jelaskan
association of disorder System for pola asuh orang 1, p = 0,008. Ukuran
autism Children, Second tua h2, ukuran
spectrum Edition (BASC-2), efek,menunjukkan
disorder The Parenting bahwa lebih dari
atypicality with Alliance Inventory sepertiga variabilitas
parenting (PAI) dalam laporan orang
stress tua tentang atipikal
(Hill-chapman, dapat dipertanggung
Herzog and jawabkan
Maduro, 2013) berdasarkan tingkat
fokus anakaliansi
pengasuhan
Kelompok tersebut
tidak berbeda dalam
aliansi pengasuhan

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Jurnal Keperawatan Jiwa (JKJ): Persatuan Perawat Nasional Indonesia
Volume 9 No 2 Hal 243 - 250, Mei 2021, e-ISSN 2655-8106, p-ISSN2338-2090
FIKKes Universitas Muhammadiyah Semarang bekerjasama dengan PPNI Jawa Tengah

SYSTEMATIC REVIEW : INTERVENSI TERAPI MUSIK TERHADAP


KEMAMPUAN INTERAKSI SOSIAL PADA ANAK AUTISME
Fitri Afdhal*, Eva Chundrayetti, Deswita
Fakultas Keperawatan, Universitas Andalas, Limau Manis, Kec. Pauh, Kota Padang, Sumatera Barat,
Indonesia, 25163
*afdhalfitria@gmail.com

ABSTRAK
Interaksi sosial adalah hubungan manusia dengan manusia lainnya atau hubungan manusia dengan
kelompok atau hubungan kelompok dengan kelompok. Tujuan penelitian ini adalah untuk
menganalisis pengaruh intervensi terapi musik terhadap kemampuan interaksi sosial pada anak
autisme. Metode penelitian berupa systematic review ini dimulai dari pencarian data menggunakan 5
database yaitu Science Direct, PuBmed, SAGE, Taylor & Francis Online (Tandfonline), dan Google
Scholar dengan rentang tahun 2013-2020 dengan jumlah 1.031 artikel. Ditemukan 9 artikel yang
memenuhi kriteria yang dinilai menggunakan the JBI critical appraisal tools. Hasil telaah artikel yang
telah dilakukan adalah terapi musik diberikan dengan berbagai metode seperti improvisasi,
mendengarkan musik, dan menyanyi. Jenis musik yang diberikan adalah murrotal Al-Qur’an, musik
klasik, dan musik instrumental. Kesimpulan dari telaah artikel ini adalah metode yang bisa diberikan
adalah metode improvisasi dengan durasi waktu minimal 30 menit dan durasi waktu maksimal adalah
60 menit. Jenis musik yang bisa diberikan adalah murrotal Al-Qur’an dan musik klasik. Rekomendasi
dalam penelitian adalah melakukan intervensi terapi musik dengan metode improvisasi, jenis musik
murrotal Al-Qur’an dan musik klasik.

Kata kunci: anak autisme; terapi musik; interaksi sosial

SYSTEMATIC REVIEW : MUSIC THERAPY INTERVENTION ON SOCIAL


INTERACTION ABILITY IN CHILDREN WITH AUTISM

ABSTRACT
Social interaction was the relationship between humans and other humans or human relations with
groups or group relations with groups. The purpose of this study was to analyze the effect of music
therapy intervention on social interaction skill in children with autism. The research method in the
form of a systematic review started from searching data using 5 databases, namely Science
Direct, PuBmed, SAGE, Taylor & Francis Online (Tandfonline), and Google Scholar with a range
of 2013-2020 with a total of 1,031 articles. There were 9 articles that met the criteria that were
assessed using the JBI critical appraisal tools. The results of the review of the articles that had
been carried out were that music therapy was given by various methods such as improvisation,
listening to music, and singing. The types of music provided were murrotal Al-Qur'an, classical
music, and instrumental music. The conclusion from the review of this article was that the method
could be given was an improvised method with a30 minutes minimum duration and a 60 minutes
maximum duration . The types of music that could be provided were murrotal Al-Qur'an and
classical music. Recommendations in this study was to intervene in music therapy with improvised
methods, murrotal Al-Qur'an music and classical music.

Keywords: children with autism; music therapy; social interaction

PENDAHULUAN komunikasi yang abnormal, serta pola


Autisme adalah gangguan perkembangan perilaku yang terbatas, repetitif dan tetap.
pada anak yang mulai terlihat pada 3 tahun Autisme merupakan gangguan
pertama kehidupan dengan bentuk perkembangan yang berhubungan dengan
keterbatasan dalam hubungan sosial, perilaku yang umumnya disebabkan oleh

243
Jurnal Keperawatan Jiwa (JKJ): Persatuan Perawat Nasional Indonesia
Volume 9 No 2 Hal 243 - 250, Mei 2021, e-ISSN 2655-8106, p-ISSN2338-2090
FIKKes Universitas Muhammadiyah Semarang bekerjasama dengan PPNI Jawa Tengah

kelainan struktur otak atau fungsi otak memiliki kecenderungan terhadap stimulus
(Daulay, 2017). Anak laki-laki memiliki suara yang dikeluarkan oleh musik meskipun
peluang empat kali lebih besar untuk anak autisme memiliki gangguan pada sistem
mengalami gangguan autisme dibanding saraf (Bharathi et al., 2019; LaGasse, A.,
dengan anak perempuan (Astuti et al., 2017). 2014). Musik yang didengarkan dapat
memberikan suasana yang menyenangkan
Berdasarkan data yang dikumpulkan World serta dapat mempengaruhi proses kognitif
Health Organization (WHO), 1 dari 160 (Sumartini et al., 2020).
anak didiagnosa memiliki gangguan
autisme (Subiantoro, 2018). Prevalensi Menurut Anam et al. (2019), pada anak
Autism Spectrum Disorder (ASD) di autisme apabila diberikan terapi musik dapat
seluruh dunia terus mengalami peningkatan memperbaiki dan mengubah perilaku,
dari tahun ke tahun, dilaporkan prevalensi pandangan mata, perhatian bersama,
autisme di seluruh dunia berjumlah 1-3% mengembangkan kesadaran tubuh,
(Bharathi et al., 2019). Tahun 2016 Pusat komunikasi, serta dapat menurunkan
Kesehatan Nasional untuk statistik kecemasan, emosional, dan hiperaktivitas.
kesehatan merilis angka prevalensi terbaru Berdasarkan uraian di atas, peneliti tertarik
dan melaporkan rekor tinggi baru dengan untuk mendeskripsikan systematic review
mengutip autism spectrum disorder (ASD) penelitian terbaru tentang intervensi terapi
dari 36 anak dapat ditemukan 1 didiagnosis musik terhadap kemampuan interaksi sosial
autisme (Zablotsky et al., 2017). pada anak autisme. Jika kemampuan
berinteraksi anak autisme tidak terus dilatih,
Memperbaiki keadaan anak dengan autisme maka kemungkinan besar anak autisme
dapat diusahakan dengan melakukan tersebut akan jatuh ke rentang respon yang
beberapa intervensi di antaranya adalah paling maladaptif yaitu paranoid (Will et al.,
terapi perilaku Applied Behaviour Analysis 2018). Untuk itu, penelitian ini bermaksud
(ABA), pemberian obat, terapi akupuntur, melakukan evaluasi terhadap
terapi musik, terapi balur, terapi diet penatalaksanaan anak autisme secara
(Rinakri, 2018; Fueyo et al., 2015). Terapi nonfarmakologi yaitu, dengan pemberian
musik adalah salah satu terapi alternatif yang terapi musik yang selama ini pernah
digunakan dalam upaya preventif dan dilakukan dan seberapa besar intervensi
promotif (Astuti et al., 2017). Terapi musik tersebut memberikan kontribusi terhadap
merupakan salah satu terapi komplementer penanganan anak autisme dalam mengatasi
yang dapat meningkatkan kemampuan masalah interaksi sosial, yang pada akhirnya
interaksi sosial anak autisme. Terapi musik diharapkan dapat dihasilkan suatu
termasuk terapi yang efektif dan tidak rekomendasi penatalaksanaan yang dapat
mengancam serta dapat memperbaiki atau lebih bisa dipertahankan.
menghilangkan kesulitan hidup secara fisik,
psikis, sosial, distres spiritual dan METODE
meningkatkan kenyamanan (Eren, 2015). Metode yang digunakan dalam penelitian
ini adalah metode systematic review yaitu
Menurut Idayanti & Sartika (2016), musik metode yang digunakan untuk
merupakan media yang mudah digunakan mengidentifikasi, mengevaluasi, dan
dibandingkan dengan media lainnya dan juga menafsirkan semua penelitian yang
memberikan rasa aman karena musik tidak tersedia dengan bidang topik fenomena
menimbulkan efek samping dan membantu yang menarik, dengan pertanyaan
mengurangi kecemasan dalam berinteraksi penelitian tertentu yang relevan. Dengan
langsung dengan orang lain (Subiantoro, penggunaan metode systematic review
2018; Maria et al., 2014). Anak autisme dapat dilakukan review dan identifikasi

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jurnal secara sistematis yang pada setiap menggunakan PICOT template yang terdiri
prosesnya mengikuti langkah-langkah dari: (a) Population/Problem yaitu anak
atau protokol yang telah ditetapkan autisme usia 3-18 tahun dengan masalah
(Triandini et al., 2019). Pada penelitian interaksi sosial; (b) Intervention yaitu
ini peneliti menelaah artikel tentang perlakuan yang sedang dipertimbangkan
intervensi terapi musik dalam dalam studi sesuai dengan tema terapi
meningkatkan kemampuan interaksi sosial musik; (c) Comparison yaitu intervensi lain
pada anak autisme. yang digunakan sebagai pembanding; (d)
Outcome adalah hasil yang diperoleh dari
Pencarian artikel pada 5 database studi sebelumnya yang sesuai dengan tema
menggunakan kata kunci (“music therapy” yang sudah ditentukan; (e) type of studies
or “audio therapy”) and (“autism” or adalah desain penelitian yang digunakan
“autistic” or “autism spectrum disorder”) dalam artikel yang direview yaitu quasy
and (“children”) and (“social skills” or experimental dan randomized controlled
“social interaction”). Strategi yang trials (RCT).
digunakan untuk mencari artikel

Jumlah artikel yang diidentifikasi melalui pencarian data pada 5 database Jumlah duplicate dihapus (n = 105)
(n = 1.031)

Artikel skrining berdasarkan duplikasi (n = 926) Excluded (n = 821)

Artikel skrining berdasarkan judul (n = 105) Excluded (n = 56)

Artikel skrining berdasarkan abstrak (n = 49) Excluded (n = 30)

Artikel full text dan kriteria kelayakan (n = 19)

Artikel yang sesuai dan bisa digunakan (n = 9)

Skema 1. Diagram Alir PRISMA Pencarian Literatur Intervensi Terapi Musik terhadap
Kemampuan Interaksi Sosial pada Anak Autisme

HASIL tersebut tidak memaparkan secara rinci


Ditemukan 19 artikel yang memenuhi sehingga 9 artikel yang bisa dinilai
kriteria inklusi, tetapi setelah dilakukan kualitasnya dengan bantuan the JBI
analisa untuk penilaian kualitas artikel, Critical Appraisal Tools.
terdapat 10 artikel yang dikeluarkan atau
ekslusi, karena study design dalam artikel

Tabel 1.
Analisis artikel
Lama
Penulis, tahun, Metode dan Jenis
No. Study Design Partisipan penelitian dan Outcome
dan negara Musik
instrumen
1. Bharathi et al. Quasi 52 anak 1 minggu Improvisasi Intervensi terapi
(2019) India Experimental Lembar Instrumental, musik
observasi klasik, dan menunjukkan
murrotal Al- peningkatan

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Lama
Penulis, tahun, Metode dan Jenis
No. Study Design Partisipan penelitian dan Outcome
dan negara Musik
instrumen
Qur’an kemampuan
keterampilan
sosial pada anak
autisme
2. Astuti et al. Quasi 30 anak 2 minggu Mendengarkan Terdapat
(2017) Experimental Lembar musik perbedaan yang
Indonesia observasi Murrotal Al- signifikan pada
Qur’an perkembangan
perilaku
3. Ghasemtabar Quasi 27 anak 45 hari Improvisasi Intervensi terapi
et al. (2020) Experimental Lembar Musik instrumental musik
Iran observasi berpengaruh
terhadap
keterampilan
sosial pada anak
autisme
4. Khanzadeh & Quasi 30 anak 7 minggu Improvisasi Intervensi terapi
Imankhah Experimental Lembar Musik instrumental musik
(2017) Iran observasi meningkatkan
prososial anak
autisme
5. Sharda et al. Randomized 51 anak 8-12 minggu Improvisasi Intervesni terapi
(2018) Kanada Controlled Lembar Musik instrumental musik
Trial observasi memberikan
peningkatan pada
keterampilan
sosial anak autism

6. LaGasse Randomized 17 anak 5 minggu Improvisasi Anak autisme


(2014) Controlled Lembar Musik instrumental menunjukkan
Amerika Trial observasi peningkatan pada
perhatian
bersama,
pandangan mata
7. Thompson et Randomized 23 anak 16 minggu Improvisasi Hasil
al. (2013) Controlled Lembar Musik instrumental menunjukkan ada
Australia Trial observasi pengaruh terapi
musik yang
diberikan terhadap
kemampuan
interaksi sosial
pada anak autisme
8. Schwartzberg Randomized 30 anak 1 minggu Menyanyi Didapatkan hasil
et al. (2013) Controlled Lembar Musik instrumental berpengaruh
Amerika Trial observasi terhadap
keterampilan
sosial pada anak
autisme
9. Mossler et al. Randomized 48 anak 5 bulan Improvisasi Hasil yang
(2017) Controlled Lembar Musik instrumental didapatkan

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Jurnal Keperawatan Jiwa (JKJ): Persatuan Perawat Nasional Indonesia
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FIKKes Universitas Muhammadiyah Semarang bekerjasama dengan PPNI Jawa Tengah

Lama
Penulis, tahun, Metode dan Jenis
No. Study Design Partisipan penelitian dan Outcome
dan negara Musik
instrumen
Norwegia Trial observasi memberikan
perubahan dalam
keterampilan
sosial pada anak
autisme

PEMBAHASAN yang dirasakan diruangan tersebut sebagai


Berdasarkan hasil analisis artikel yang bukti isyarat musik dan verbal. Hal ini
telah dilakukan terhadap 9 artikel, sejalan dengan penelitian Kim et al. yang
intervensi terapi musik yang dilakukan menemukan bahwa jumlah dan durasi
memiliki pengaruh yang signifikan kontak mata pada sesi terapi musik
terhadap kemampuan interaksi sosial pada improvisasi secara signifikan lebih lama
anak autisme yang dapat dilihat pada nilai dibandingkan pada sesi bermain (Anam et
p-value ≤ 0,05. Intervensi terapi musik al., 2019). Kemampuan mempertahankan
diberikan dengan metode pemberian terapi perhatian bersama merupakan komponen
musik, dan jenis musik yang diberikan penting yang mendukung pengembangan
pada terapi musik. kemampuan lain dibidang komunikasi,
interaksi sosial, dan bahasa.
Metode Pemberian Terapi Musik
Pada penggunaan metode 7 artikel
menggunakan metode improvisasi, dan 2
artikel menggunakan metode Jenis Musik yang Digunakan
mendengarkan musik dan metode Pada penggunaan jenis musik, ditemukan
bernyanyi. Ditemukan 3 metode dalam tidak semua artikel menjelaskan jenis
pemberian terapi musik yaitu improvisasi, musik seperti apa yang didengarkan atau
mendengarkan musik, dan bernyanyi. diputarkan selama pemberian intervensi
Tujuh artikel yang ditelaah menggunakan terapi musik. Berdasarkan hasil analisis
metode improvisasi, metode artikel, ada beberapa artikel yang
mendengarkan musik ditemukan pada 1 menggunakan 1 jenis musik saja dan ada
artikel, dan metode dengan menyanyi artikel yang menggunakan lebih dari 1
ditemukan pada 1 artikel. jenis musik yang digunakan dalam
pemberian intervensi terapi musik.
Terapi musik improvisasi telah terbukti Ditemukan 3 jenis musik dalam pemberian
meningkatkan perhatian bersama, terapi musik yaitu musik instrumental,
keterampilan sosial emosional, musik klasik, dan murrotal Al-Qur’an,
keterlibatan sosial, dan komunikasi sosial secara keseluruhan artikel menggunakan
nonverbal (LaGasse, 2017). Penelitian musik instrumental. Pemberian musik
yang dilakukan Subiantoro diperoleh hasil instrumental ditemukan pada 8 artikel,
penggunaan metode improvisasi dalam pemberian terapi musik dengan jenis
pemberian intervensi terapi musik musik klasik ditemukan pada 1 artikel, dan
memiliki pengaruh yang signifikan pemberian murrotal Al-Qur’an ditemukan
terhadap kemampuan interaksi sosial pada pada 2 artikel. Namun ada 1 artikel yang
anak autisme (Subiantoro, 2018). Hal ini memberikan lebih dari 1 jenis musik yaitu
dibuktikan dengan peningkatan pada penelitian yang dilakukan oleh Bharathi et
kontak mata anak, interaksi dan permainan al. memberikan jenis musik instrumental,
bersama di dalam kelompok, adanya klasik, dan murrotal Al-Qur’an pada
kesadaran anak akan kehadiran orang lain penelitiannya.

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bagi individu dengan ASD untuk


Untuk jenis musik yang digunakan dalam mempercayai orang-orang di sekitar
artikel, tidak semua artikel menjelaskan mereka, tempat di mana mereka dapat
dan memaparkan jenis musik yang merasakan persahabatan yang tidak
digunakan dalam pemberian terapi musik. menghakimi, dan kelompok tempat
Ditemukan artikel yang hanya mereka dan menikmati menjadi diri
menjelaskan kelompok terlibat dalam mereka sendiri. Dengan demikian mereka
menyanyi, bermain alat musik sambil dapat belajar bagaimana mengatasi
mendengarkan musik. Ada juga artikel masalah yang mereka temui di dunia luar
yang menjelaskan kelompok diputarkan (Eren, 2015).
musik dalam satu ruangan yang tenang
dan anak ikut terlibat dalam memainkan Asumsi peneliti metode terapi musik yang
alat musik yang ada dan diinginkan oleh baik digunakan dalam memberikan
anak, tanpa menjelaskan jenis musik apa intervensi terapi musik adalah metode
yang didengarkan atau diputarkan. improvisasi yang menjalin hubungan anak
Sehingga peneliti mengelompokkan pada dan terapis dan melibatkan anak selama
musik instrumental yang digunakan dalam terapi musik diberikan, jenis musik yang
artikel tersebut. Sementara durasi dalam baik digunakan adalah murrotal Al-Qur’an
pemberian terapi musik juga beragam dan musik klasik karena musik yang baik
dimulai dari 30 menit sampai dengan 60 dan dianjurkan adalah musik atau lagu
menit. Namun ada 1 artikel yang tidak dengan tempo sekitar 60 ketukan per
menyebutkan berapa lama durasi waktu menit yang bersifat rileks, berirama
dalam pemberian intervensi terapi musik, lembut dan teratur seperti murrotal Al-
artikel hanya menyebutkan durasi musik Qur’an dan musik klasik. Murrotal Al-
yang diputar yaitu 12 menit 15 detik dan Qur’an sebagai terapi suara dapat
tidak menjelaskan berapa lama sesi terapi meningkatkan gelombang otak alpha yang
musik berlangsung sampai berakhirnya tinggi, yang membuat anak merasa tenang,
sesi terapi, dan bahagia sehingga meningkatkan
perhatian anak.
Sifat musik yang tidak mengancam dan
mengurangi kecemasan dalam interaksi SIMPULAN
langsung dengan orang lain dan Ditemukan 3 metode pemberian intervensi
meningkatkan keterampilan sosial anak terapi musik yaitu metode improvisasi,
autisme (Eren, 2015). Pada dasarnya menyanyi, dan mendengarkan musik.
musik sebagai media intervensi dan terapi Ditemukan 3 jenis musik dalam pemberian
memiliki tiga karakteristik dasar. Pertama, terapi musik pada anak autisme yaitu musik
musik memilik pengaruh pada sistem saraf instrumental, musik klasik, dan murrotal Al-
pusat khususnya sitem limbik dan efeknya Qur’an. Berdasarkan hasil telaah artikel
digeneralisasikan secara luas meliputi yang dilakukan kepada 9 artikel, secara
tubuh, pikiran, emosi, dan mental, kedua, keseluruhan menyebutkan bahwa intervensi
musik dapat digunakan untuk mengurangi terapi musik yang dilakukan memiliki
bahkan menggantikan peran obat, dimana pengaruh yang signifikan terhadap
hal ini bisa menekan harga pengobatan, kemampuan interaksi sosial pada anak
ketiga, efek samping dari terapi musik autisme.
sangat minim bahkan bisa diabaikan
sehingga terapi musik dapat dimasukan DAFTAR PUSTAKA
sebagai intervensi pelengkap dalam proses Anam, A., Khasanah, U., & Isworo, A.
pengobatan major (Kriswanto, 2020). (2019). Terapi Audio dengan
Intervensi musik dapat menjadi titik awal Murottal Alquran Terhadap Perilaku

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Anak Autis: Literature Review. Idayanti, & Sartika, D. (2016). Efektivitas


1(2):81–83 Terapi Musik Klasik Mozart
terhadap Memori Anak Penyandang
Astuti, A, Suryono, Widyawati, M.N., Autis. Proteksi Kesehatan; 5(2)
Suwondo, A. & M. (2017). Effect of
Audio Therapy Using Al-Qur’an Khanzadeh, A. A. H., & Imankhah, F.
Murrotal on. Belitung Nurs J. (2017). Research Paper: The Effect
3(5):470–7. of Music Therapy Along With Play
https://doi.org/10.33546/bnj.189 Theray on Social Behaviors and
Stereotyped Behaviors of Children
Bharathi G, Venugopal A, Vellingiri B. With Autism; 5(4):251-262
(2019). Music therapy as a
therapeutic tool in improving the Kim J, Wigram T, Gold C. (2008). The
social skills of autistic children. effects of improvisational music
Egypt J Neurol Psychiatry therapy on joint attention behaviors
Neurosurg. 55(1). in autistic children: A randomized
https://doi.org/10.1186/s41983-019- controlled study. J Autism Dev
0091-x Disord ;38(9):1758–66

Daulay N-. (2017). Struktur Otak dan Kriswanto YJ. (2020). Peran Musik
Keberfungsiannya pada Anak Sebagai Media Intervensi Dalam
dengan Gangguan Spektrum Autis: Lingkup Praktik Klinis. J Seni dan
Kajian Neuropsikologi. Bul Psikol. Desain ;2(3):81–6
25(1):11–25.
https://doi.org/10.22146/buletinpsik LaGasse AB. (2015). Effects of a music
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Eren B. (2015). The Use of Music with autism. J Music Ther
Interventions to Improve Social ;51(3):250–75
Skills in Adolescents with Autism
Spectrum Disorders in Integrated LaGasse B. (2017). Social outcomes in
Group Music Therapy Sessions. children with autism spectrum
Procedia - Soc Behav Sci [Internet]. disorder: a review of music therapy
197(February):207–13. Tersedia outcomes. Patient Relat Outcome
pada: Meas; Volume 8:23–32
http://dx.doi.org/10.1016/j.sbspro.20
15.07.125 Maria, S., Fitryasari, R., & Endang, H.
(2014). Pengaruh Terapi Musik
Fueyo M, Caldwell T, Mattern SB, Zahid Mozart Terhadap Penurunan
J, Foley T. (2015). The health home: Perilaku Tantrum Pada Anak
A service delivery model for autism Autisme Di Sekolah Autis Harapan
and intellectual disability. Psychiatr Bunda Surabaya ;2(1)
Serv. 2015;66(11):1135–7
Mössler, K., Gold, C., Aßmus, J.,
Hosseini M, Fayyaz I, Arab S, Naghashian Schumacher, K., Calvet, C., Reimer,
H, Poudineh Z, Ghasemtabar S. S., Iversen, G., & Schmid, W.
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Disorder. Journal of Autism and randomized controlled study. Child


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Zygawindi Nurhidayati | Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Casein dengan Gangguan Perilaku pada
Anak Autistik

Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Kasein dengan


Gangguan Perilaku pada Anak Autistik

Zygawindi Nurhidayati
Fakultas Kedokteran Universitas Lampung

Abstrak
Autistik merupakan suatu gangguan perkembangan pervasif yang mempengaruhi kemampuan dalam interaksi sosial,
komunikasi dan perilaku. Kelainan tersebut terlihat sebelum anak berusia tiga tahun. Anak dengan gangguan autistik
memiliki gangguan perilaku yang disebut perilaku autis. Gangguan perilaku pada anak autistik tersebut dipengaruhi oleh
berbagai faktor. Salah satu faktor yang dapat mempengaruhi gangguan perilaku pada anak autistik adalah makanan
terutama makanan yang mengandung gluten dan kasein. Hal tersebut terjadi karena kedua jenis protein tersebut sulit
dicerna oleh tubuh. Pada membran saluran cerna anak dengan autistik ditemukan kelainan berupa adanya pori-pori yang
tidak normal dan hiperpermeabilitas mukosa usus. Gluten dan kasein pada anak autistik hanya terpecah sampai
polipeptida. Polipeptida tersebut kemudian terserap ke dalam aliran darah dan beredar dalam bentuk gluteo dan
caseomorphin. Gluteo dan caseomorphin tersebut kemudian terikat pada reseptor opiod di otak. Reseptor tersebut
mempengaruhi mood dan perilaku sehingga terikatnya kedua zat tersebut dapat mempengaruhi gangguan perilaku pada
anak autistik. Oleh karena itu, salah satu cara untuk mengurangi gangguan perilaku pada anak autistik, yaitu dengan cara
menghindari makanan yang mengandung gluten dan casein.

Kata kunci: Autistik, casein,gluten, perilaku autis

The Influence of Gluten Free Casein Free Foods Consumption with Behavior
Disorders in Autistic Children
Abstract
Autistic is a pervasive developmental disorder that influences the ability of social interaction, communication and behavior.
It can be seenat the children under three years. The abnormality seen before three years of age. Children with autistic
disorder get behavioral disorders called autism behavior. Behavior disorders in autistic children is influenced by various
factors. One of the factors that can influence behavioral disorders is food, especially food that contain gluten and casein. It
happens because of two types of protein are difficult to digest. In autistic children gastrointestinal tract membrane was
found pores abnormal and hiperpermeability intestinal mucosa. Gluten and casein can be rended only up to polypeptide in
children with autistic disorder. Then, the polypeptide absorbed in to the bloodstream and circulate in the form of gluteo
and caseomorphin. Gluteo and caseomorphin bound to the opoid receptor in the brain. The receptor can influence mood
and behavior, so both of these substances can affect behavioral disorders in autistic children. Therefore, one of the way to
reduce behavioral disorders on autistic children is by avoiding foods that contain gluten and casein.

Keyword : autistic, autism behavior, casein;, gluten

Korespondensi : Zygawindi Nurhidayati, alamat KP. Cakung No. 101 Rt 004/002 Jatikramat, Jatiasih, Bekasi, HP
082186062369, e-mail zyganurhidayati@gmail.com

Pendahuluan berusia 3 tahun.2 Kasus autisme terjadi di


Anak berkebutuhan khusus merupakan berbagai negara, tanpa memandang ras, etnik,
anak yang memiliki keterbatasan dalam hal maupun latar belakang sosial ekonomi. Pada
fisik dan/atau mental yang dapat mengganggu beberapa tahun terakhir ini, kasus autis
pertumbuhan dan perkembangannya, dan meningkat terus-menerus. Menurut United
anak yang akibat keadaan tertentu Nations Educational, Scientific Organization
memerlukan penanganan secara khusus. Salah (UNESCO) pada tahun 2011 tercatat 35 juta
satu yang termasuk dalam kelompok anak orang penyandang autis yang ada diseluruh
berkebutuhan khusus adalah anak dengan dunia.Di negara maju seperti Amerika Serikat
gangguan autistik.1 Autistik adalah gangguan prevalensi anak autis pun meningkat setiap
perkembangan pervasif yang ditandai dengan tahunnya.3 Prevalensi autis dunia saat ini
ketidakmampuan dalam berinteraksi sosial, mencapai 15─20 kasus per 10.000 anak atau
berkomunikasi, dan berperilaku sesuai dengan berkisar 0,15─0,20%. Jika angka kelahiran di
perkembangan, ketertarikan dan aktifitas. Indonesia mencapai enam juta per tahun,
Kelainan tersebut terlihat sebelum anak maka jumlah penyandang autis di Indonesia

Majority | Volume 4 | Nomor 7| Juni 2015| 121


Zygawindi Nurhidayati | Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Casein dengan Gangguan Perilaku pada
Anak Autistik

per tahunnya bertambah sekitar 6.900 anak disfungsi metabolik, gangguan perkembangan
per tahun.4 Berdasarkan jenis kelaminnya, saat postnatal dan prenatal dan faktor
penderita autis empat kali lebih banyak lingkungan.2 Sampai saat ini masih belum
diderita oleh laki-laki daripada perempuan. dapat dipastikan penyebab dari autisme, tetapi
Dengan kata lain, anak laki-laki lebih rentan terdapat sejumlah teori yang mendukung
terkena autis dibandingkan anak perempuan.2 terkait penyebab autisme, antara lain sebagai
Anak autis memiliki gangguan perilaku berikut :
khas yang disebut perilaku autis. Pada sebagian a. Genetik
besar anak autis sering memperlihatkan Gangguan autistik diperkirakan sekitarr
perilaku seperti hiperaktif, menyakiti diri 90%, dicurigai adanya abnormalitas
sendiri, suka bertepuk tangan berulang genetik pada kromosom 7, 2 dan 15.9
ulang,suka mengamuk, tidak mampu dalam Hasil penelitian pada keluarga dan anak
menatap lawan bicara.2 Perilaku-perilaku kembar menunjukkan adanya faktor
tersebut disebabkan oleh berbagai faktor genetik yang berperan dalam
seperti umur, intelegensia, pola asuh orang perkembangan autisme.10
tua, intensitas terapi, pola konsumsi pangan b. Faktor perinatal
dan lain sebagainya.5 Komplikasi perinatal yang cukup tinggi
Pola konsumsi makanan merupakan ditemukan pada anak-anak dengan
salah satu faktor yang harus diperhatikan bagi gangguan autistik, walaupun tidak ada
anak dengan autistic spectrum disorder (ASD) komplikasi yang secara langsung
karena terdapat makanan-makanan tertentu dinyatakan sebagai penyebab.
yang menjadi pantangan. Hal tersebut juga Komplikasi yang sering dilaporkan adalah
terkait dengan salah satu terapi diet bagi adanya perdarahan di trisemester
penderita ASD berupa diet gluten free casein pertama dan adanya mekonium dalam
free (GFCF). Diet tersebut diterapkan karena cairan amnion lebih sering ditemukan
makanan yang mengandung gluten dan kasein pada anak dengan gangguan autistik.11
seperti gandum dapat meningkatkan c. Neuroanatomi
hiperpermeabilitas usus yang mengakibatkan Berbagai kondisi neuropatologi diduga
gluten dan kasein tidak tercerna dengan baik dapat mendorong timbulnnya gangguan
dan ada yang mengalir ke aliran darah dan otak perilaku pada anak-anak autistik, ada
sehingga mempengaruhi perilaku dari anak beberapa daerah di otak anak autistik
autis tersebut.6 yang diduga mengalami disfungsi.10
Lobus temporalis telah diperkirakan
Isi sebagai bagian penting dalam otak yang
Autistic Spectrum Disorder (ASD) adalah mungkin abnormal pada gangguan
gangguan perkembangan pervasif yang autistik. Hal tersebut berdasarkan
ditandai dengan ketidakmampuan dalam laporan adanya sindroma yang mirip
berinteraksi sosial, berkomunikasi, dan gangguan autistik pada orang dengan
berperilaku sesuai dengan perkembangan, kerusakan lobus temporalis. Jika daerah
ketertarikan dan aktifitas. Kelainan tersebut temporalis rusak, perilaku sosial yang
terlihat sebelum anak berusia 3 tahun.2 diharapkan menghilang, dan
Menurut Atchison dalam Marpaung (2014) kegelisahan, perilaku motorik berulang,
istilah Pervasive developmental disorder (PDD) dan kumpulan perilaku terbatas
menjadi Autistic Spectrum Disorder (ASD) ditemukan.11 Pada otak kecil juga
berubah sejak dilakukannya revisi terhadap ditemukan kelainan, terutama pada
Diagnostic and statistical Manual Of Mental lobus ke VI dan VII. Jumlah sel purkinje di
(DSM) Disorder IV TR menjadi Diagnostic and otak kecil juga didapatkan sangat sedikit,
statistical Manual Of Mental (DSM) Disorder sehingga terjadi gangguan keseimbangan
V.7,8 serotonin dan dopamin, menyebabkan
Autistic Spectrum Disorder (ASD) gangguan impuls di otak. Ditemukan
merupakan kelainan neurodevelopmental yang pula kelainan khas didaerah sistem
belum dapat dipastikan penyebabnya. Berbagai limbik yang disebut hipokamus dan
teori tentang autisme banyak dikemukakan amigdala. Akibatnya terjadi gangguan
diantaranya berkaitan dengan faktor genetik, fungsi kontrol terhadap agresi dan

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Anak Autistik

emosi, gangguan sensoris, daya ingat, dalam bermain imajinatif atau


dan perilaku aneh serta hiperaktif pada berteman, tidak adanya
anak-anak dengan gangguan autistik.12 ketertarikan terhadap teman
d. Faktor imunologi sebaya.
Sistem imun diduga berperan pada B. Perilaku yang terbatas, pola perilaku
terjadinya autisme karena ditemukannya yang repetitif, ketertarikan, atau
penurunan respon imun pada anak aktivitas yang termanifestasi minimal
dengan gangguan autistik. Beberapa dua dari perilaku berikut:
bukti yang menyatakan bahwa a) Pergerakan motor repetitif atau
inkompatibilitas antara ibu dan embrio stereotipe, penggunaan objek-objek
atau janin dapat menyebabkan atau bahasa, misalnya: perilaku
gangguan autistik.10,11 stereotipe yang sederhana,
e. Faktor infeksi virus membariskan mainan-mainan atau
Peningkatan gangguan autisme pada membalikkan objek.
anak-anak dengan congenital rubella, b) Perhatian yang berlebihan pada
herpes simplex, ensefalitis, dan infeksi kesamaan, rutinitas yang kaku atau
cytomegalovirus, membuat peniliti pola perilaku verbal atau non-verbal
menduga bahwa infeksi virus tersebut yang diritualkan, contohnya stress
juga turut berperan sebagai salah satu ekstrim pada suatu perubahan yang
penyebab gangguan autistik.10 kecil, kesulitan pada saat adanya
Berbagai faktor-faktor yang diduga proses perubahan, pola pikir yang
berperan sebagai penyebab gangguan autistik kaku.
erat dikaitkan dengan gejala klinis yang terjadi c) Kelekatan dan pembatasan diri yang
pada anak-anak dengan gangguan autistik. tinggi pada suatu ketertarikan yang
Terdapat sekelompok gejala khas pada abnormal. Contoh: kelekatan yang
gangguan autistik yaitu gangguan interaksi kuat atau preokupasi pada objek-
sosial, gangguan komunikasi dan gangguan objek yang tidak biasa, pembatasan
perilaku . 10 yang berlebihan atau perseverative
American Psychiatric Association (APA) interest.
dalam buku Diagnostic and Statistical Manual d) Hiperaktivitas/hipoaktivitas pada
of Mental Disorder Fifth Edition Text Revision, input sensori atau ketertarikan yang
menentukan kriteria diagnostik dari gangguan tidak biasa pada aspek sensori pada
ASD adalah sebagai berikut : 13 lingkungan. Contoh, sikap tidak
A. Terhambatnya dalam komunikasi dan peduli pada rasa sakit atau
interaksi sosial yang bersifat menetap temperatur udara, respon yang
pada berbagai konteks, seperti; berlawanan pada suara atau tekstur
a) Kekurangan dalam kemampuan tertentu, penciuman yang
komunikasi sosial dan emosional. berlebihan atau sentuhan dari
Contohnya pendekatan sosial yang objek, kekaguman visual pada
tidak normal dan kegagalan untuk cahaya atau gerakan.
melakukan komunikasi dua arah, C. Gejala-gejala harus muncul pada periode
kegagalan untuk berinisiatif atau perkembangan awal (tapi mungkin tidak
merespon pada interaksi sosial. termanifestasi secara penuh sampai
b) Terganggunya perilaku komunikasi tuntutan sosial melebihi kapasitas yang
non-verbal yang digunakan untuk terbatas, atau mungkin tertutupi dengan
interaksi sosial. Integrasi komunikasi strategi belajar dalam kehidupannya).
verbal dan non-verbal yang sangat D. Gejala-gejala menyebabkan gangguan
parah, hilangnya kontak mata, yang signifikan pada kehidupan sosial,
bahasa tubuh dan ekspresi wajah. pekerjaan atau situasi penting lain dalam
c) Kekurangan dalam kehidupan.
mengembangkan, mempertahankan E. Gangguan-gangguan ini lebih baik tidak
hubungan. Contohnya kesulitan disebut dengan istilah ketidakmampuan
menyesuaikan perilaku pada intelektual (intellectual disability) atau
berbagai konteks sosial, kesulitan gangguan perkembangan intelektual

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Zygawindi Nurhidayati | Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Casein dengan Gangguan Perilaku pada
Anak Autistik

atau keterlambatan perkembangan autistik yang masih dapat menerima


secara global. perubahan yang terjadi disekitarnya, tetapi
Gangguan perilaku yang dialami anak menjadi sangat cemas dan bingung dengan
autis digolongkan menjadi dua yaitu perilaku perubahan sekecil apapun tersebut. contohnya
yang eksesif dan perilaku defisit. Perilaku seorang anak autistik akan mengalami
eksesif adalah perilaku yang hiperaktif dan kesukaran bila jalan yang biasa ia tempuh ke
tantrum seperti menjerit, menggigit, mencakar sekolah diubah. Perilaku rutinitas tersebut
dan memukul serta menyakiti diri sendiri (self jarang atau sulit dihilangkan dan perilaku ini
abuse). Perilaku defisit adalah perilaku yang dapat menjadi tidak terkontrol dan
menimbulkan gangguan bicara atau kurangnya mengganggu dalam proses belajar. Perilaku ini
perilaku sosial seperti tertawa atau menangis bukan hanya suatu kelemahan mereka tetapi
tanpa sebab serta melamun. Perilaku-perilaku merupakan satu bagian agar tetap dapat
tersebut muncul karena berbagai sebab yang menjalin hubungan dengan orang lain atau
terkadang terkesan sederhana dan terjadi dunia luar yang tidak diketahuinya. Hal
secara tiba-tiba.14 tersebut karena anak autistik memiliki
Perilaku agresif pada anak autis berbeda keterbatasan dalam pemahaman komunikasi
dengan anak normal karena terjadi secara verbal dan non verbal serta intelegensi sosial
berlebihan dan terkadang tanpa penyebab yang terhambat.5,10
yang jelas serta tiba-tiba. Perilaku agresif pada Karakteristik gangguan perilaku pada
anak autis yang merupakan suatu tanda dari autistik menjadi makin terlihat seiring dengan
gangguan, seperti temper tantrum, pertumbuhan anak dan berlanjut sepanjang
memberantakan benda, menggigit orang lain hidupnya dengan sejumlah bentuk variasi
Perilaku tersebut diikuti dengan menyakiti diri tingkat keparahan dan juga berbeda antara
sendiri seperti membenturkan kepala, menarik anak autistik yang satu dan yang lainnya.
rambut.5 Perilaku membahayakan tersebut Seperti pada salah satu penelitian yang
merupakan akibat kurangnya perasaan bahaya membandingkan kemampuan berinteraksi
pada anak autis. Banyak anak autis yang antara kelompok anak-anak, remaja dan
memiliki peningkatan ambang nyeri atau dewasa menunjukkan kemampuan berinteraksi
perubahan respon terhadap nyeri. Hal tersebut pada kelompok usia remaja lebih sedikit
dikarenakan pada anak autis terdapat terganggu dibandingkan dengan kelompok usia
gangguan fungsi sensori.11 dewasa. Perbedaaan tingkat karakteristik
Anak autistik memiliki aktivitas yang gangguan perilaku tersebut dipengaruhi oleh
kaku, berulang, dan monoton. Anak autis dapat berbagai faktor seperti kematangan anak,
memiliki ketertarikan pada suatu hal hingga pemahaman anak, diet makanan, terapi yang
mengabaikan aktivitas yang lainnya. Hal diberikan, penanganan yang bersifat medis,
tersebut juga mereka lakukan secara berulang- dan usaha yang sangat luar biasa dari sekolah
ulang seperti memutar-mutar botol, dan orang tua serta keluarganya.5,9
memainkan saklar listrik berjam-jam. Pola makan pada anak terutama anak
Ketertarikan tersebut bisa sampai secara autis harus mengandung jumlah zat gizi,
khusus pada bagian-bagian tertentu dari suatu terutama karbohidrat, protein dan kalsium
objek yang mereka sukai seperti memainkan yang tinggi guna memenuhi kebutuhan selama
kancing sweater.9,11 masa pertumbuhan dan perkembangan. Ada
Anak autis memiliki ketertarikan pada beberapa jenis makanan yang menyebabkan
objek yang berputar seperti memandang reaksi alergi pada anak autis seperti gula,susu
putaran kipas angin, roda mobil, atau mesin sapi, gandum, coklat, telur, kacang maupun
cuci. Anak autis juga memiliki tingkah laku yang ikan. Selain itu, konsumsi gluten dan kasein
suka mengepak-ngepakan tangan (flapping perlu dihindari karena penderita autis
hand), menggoyang-goyangkan anggota umumnya tidak tahan terhadap gluten dan
tubuhnya atau menyeringai. Stereotipi kasein. Gluten adalah protein yang bersifat
tersebut tampak hampir pada semua anak khas yang terdapat pada tepung terigu, dan
autistik. Perilaku rutinitas berulang-ulang yang dalam jumlah kecil dalam tepung serealia
mereka sukai menyebabkan mereka menolak lainnya, gluten terdiri dari dua komponen
adanya perubahan lingkungan dan rutinitas protein yaitu gliadin dan glutein. Sedangkan
baru. Walaupun demikian, ada beberapa anak kasein adalah protein kompleks pada susu yang

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Zygawindi Nurhidayati | Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Casein dengan Gangguan Perilaku pada
Anak Autistik

mempunyai sifat khas yaitu dapat menggumpal linguistik pada kelompok dengan pemberian
dan membentuk massa yang kompak.4 diet gluten free casein free tetapi tidak ada
Pada orang normal gluten dan casein perbaikan dalam keterampilan kognitif atau
akan dicerna secara sempurna oleh proses motorik.17
kimiawi dan fisik menjadi asam amino tunggal Berdasarkan penelitian tahun 2012 di
dan diserap oleh usus. Sedangkan pada anak Bandung, didapatkan bahwa sebanyak 85%
autis proses pencernaan gluten dan casein orang tua yang tidak patuh dalam menerapkan
berlangsung secara tidak sempurna.15 diet GFCF berdampak pada terjadinya
Pada kebanyakan pasien autis gangguan perilaku anak mereka dibandingkan
ditemukan adanya pori-pori yang tidak lazim pada anak autis yang orang tuanya patuh
pada membran saluran cerna dan menjalankan diet. Hal tersebut terjadi karena
hiperpermeabilitas mukosa usus. Gluten dan tidak semua makanan yang mengandung
kasein pada anak dengan gangguan autistik, gluten dan kasein dapat dengan mudah
hanya terpecah sampai polipeptida. dihilangkan dari menu makanan anak.
Hiperpermebilitas pada mukosa usus Ketidakpatuhan tersebut akan menyebabkan
menyebabkan peptide ini meningkat. gangguan perilaku anak autis seperti
Polipeptida dari kedua protein tersebut tidak mengamuk. Anak autis yang menjalani diet
tercerna keluar dari dinding usus tetapi GFCF secara patuh memiliki emosi yang lebih
terserap ke dalam aliran darah dan beredar stabil dan lebih tenang.18
dalam bentuk gluteo dan caseomorphin dan Penelitian terhadap anak autis yang
kemudian terikat pada reseptor opioid diotak. dilakukan di Pusat Terapi Pendidikan Ananda
Reseptor tersebut berhubungan dengan mood Bekasi tahun 2013 menunjukan bahwa
dan tingkah laku, sehingga menimbulkan gejala terdapat hubungan yang bermakna antara
kelainan perilaku pada anak autistik. Selain itu, frekuensi diet bebas gluten bebas kasein
adanya gangguan enzim Dipeptidylpeptidase IV dengan skor perilaku autis. Pada penelitian
pada anak autis mengakibatkan gluten tersebut, penderita autis yang mengkonsumsi
dankasein tidak tercerna dengan makanan sumber gluten dan kasein dengan
sempurna.6,12,15 frekuensi yang rendah memiliki perilaku yang
Dari penelitian Whiteley, Rodgers, lebih terarah daripada penderita autis yang
Savery dan Shattock (1999), 22 anak autis mengkonsumsi makanan sumber gluten dan
mendapat diet bebas gluten selama 5 bulan kasein dengan frekuensi tinggi.14
dibandingkan dengan 5 anak autis yang tetap Penelitian di Kota Depok tahun 2013
diberi diet mengandung gluten dan 6 pasien terhadap 35 anak ASD dengan rentang usia 3-7
autis yang digunakan sebagai kelompok tahun terkait hubungan praktik pengaturan
kontrol. Setelah 3 bulan, pada diet bebas diet dengan perilaku emosional anak dengan
gluten terjadi perbaikan verbal dan komunikasi ASD, didapatkan nilai signifikan p-value 0,001.
non verbal, pendekatan afektif, motorik, dan hal tersebut menunjukkan bahwa praktik
kemampuan anak untuk perhatian serta tidur pengaturan diet yang dilakukan memiliki
jadi lebih baik. Sedangkan pada kelompok hubungan dengan perilaku emosional pada
makanan yang masih mengandung gluten anak ASD dengan rentang usia 3-7 tahun. Diet
justru semuanya memburuk. Meskipun yang diterapkan pada penelitian tersebut tidak
penelitian ini masih menggunakan jumlah hanya diet bebas gluten bebas kasein tetapi
pasien yang sangat kecil, tetapi cukup bisa beberapa diet yang lain seperti diet bebas gula
diterima sampai sekarang.12 murni, diet bebas jamur .19
Berdasarkan penelitian yang dilakukan Pada penelitian terhadap 70 anak-anak
di Bogor tahun 2004 diperoleh hasil bahwa autis berumur 1-8 tahun yang mendapat diet
sebanyak 68,24% anak autis menunjukkan gluten free casein free ditemukan bahwa 81%
adanya perbaikan perilaku pada tingkat diantaranya mengalami perubahan perilaku
hiperaktivitas setelah dilakukan terapi diet.16 yang signifikan dalam 3 bulan yaitu berupa
Berdasarkan penelitian yang dilakukan perubahan dari isolasi sosial, kontak mata,
Knivsberg et al. selama 12 bulan dengan dua mutisme, hiperaktif, aktivitas stereotipik dan
puluh peserta yang dipasangkan kemudian serangan panik. Perubahan tersebut terus
diacak ke dalam suatu kelompok, didapatkan mengalami perbaikan selama 12 bulan.
perbaikan perilaku autisme dan kemampuan Kemudian pada 19 % yang tidak mengalami

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Zygawindi Nurhidayati | Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Casein dengan Gangguan Perilaku pada
Anak Autistik

perbaikan, 1/3 diantaranya tidak mengikuti autistik dengan menghindari konsumsi


diet dan masih memiliki banyak gluten dan makanan yang mengandung gluten dan casein.
casein dalam darah.20 Beberapa penelitian yang telah
Penelitian yang telah dilakukan di dilakukan terkait pengaruh konsumsi makanan
Sekolah Autisme Laboratorium UM, SLB Putra mengandung gluten dan casein dengan
Jaya, dan Tempat Terapi A Plus Kota Malang gangguan perilaku pada anak autistik
dengan jumlah responde 17 anak, untuk membuktikan bahwa terdapat pengaruh antara
hubungan antara pola konsumsi gluten-kasein pola konsumsi makanan bebas gluten bebas
dengan perilaku autisme dengan kekuatan casein dengan gangguan perilaku yang terjadi
korelasi sangat kuat sekali.19 pada anak autistik, walaupun dinataranya
Walaupun beberapa penelitian terdapat hasil perbaikan perilaku yang tidak
menunjukkan hasil yang signifikan terkait signifikan.
penerapan diet bebas gluten bebas kasein
dengan perbaikan perilaku pada anak dengan Simpulan
ASD, namun ada beberapa penelitian lain Berdasarkan teori yang telah dijelaskan
menunjukkan hasil yang tidak signifikan secara diatas dan beberapa penelitian yang telah
statistik. Salah satunya penelitian secara dilakukan dapat diketahui bahwa terdapat
Randomized Clinical Trial (RCT) terkait diet pengaruh antara pola konsumsi makanan
GFCF yang pernah dilakukan Elder dan bebas gluten bebas casein dengan gangguan
rekannya (2006) terhadap 15 anak yang perilaku pada anak autistik.
didiagnosis autisme tidak menunjukkan hasil
uji statistik yang signifikan, meskipun beberapa Daftar Pustaka
orang tua mereka melaporkan adanya 1. Kemenkes RI. Pedoman Pelayanan
perbaikan perilaku . 21 Kesehatan Anak di Sekolah Luar Biasa
Perbedaan hasil setiap penelitian (SLB) Bagi Petugas Kesehatan. Pedoman
bergantung oleh berbagai faktor diantaranya Pelayanan Kesehatan Anak di Sekolah Luar
besarnya sampel, metode yang digunakan, Biasa (SLB) Bagi Petugas Kesehatan.
serta kontrol yang ketat terhadap proses Jakarta: Kementerian Kesehatan RI; 2010.
penelitian. 2. Kliegman RM, Stanton BF, Schor NF,
St.Geme WJ, Behrman RE. Nelson
Ringkasan Textbook of Pediatrics (19th ed.).
Autistic spectrum disorder (ASD) Philadelphia: Saunders Elsevier Inc; 2011.
merupakan suatu gangguan perkembangan 3. Blumberg SJ, Bramlet MD, Kogan MD,
pervasive yang memiliki karakteristik berupa Schieve LA, Jones, JR . Changes in
gangguan interaksi sosial, gangguan Prevalence of Parent-reported Autism
komunikasi dan gangguan perilaku. Kelainan Spectrum Disorder in School-aged U.S.
tersebut terlihat sebelum anak berusia tiga Children: 2007 to 2011– 2012. National
tahun. Penyebab ASD sampai saat ini belum Health Statistics Reports. 2013; 65: 1─12.
dapat dipastikan tetapi terdapat sejumlah teori 4. Mashabi NA, & Tajudin NR. Hubungan
yang mendukung terjadinya kelainan tersebut Antara Pengetahuan Gizi Ibu dengan Pola
seperti genetik, faktor perinatal, Makan Anak Autis. Makara,Kesehatan.
neuroanatomi, faktor imunologi dan 2009; 13(2): 84–6.
sebagainya. 5. Yuwono W. Memahami Anak Autistik
Gangguan perilaku pada anak autistik (Kajian Teoritik dan Empirik). Bandung:
dipengaruhi oleh berbagai faktor yang salah Alfabeta; 2012.
satunya adalah makanan. Makanan yang 6. Ramadayanti, S. Perilaku Pemilihan
mengandung gluten dan casein dapat Makanan dan Diet Bebas Gluten Bebas
mempengaruhi perilaku anak autistik karena Kasein pada Anak Autis. Journal of
kedua zat tersebut tidak sempurna tercerna Nutrition College. 2013; 2(1): 35–43.
oleh tubuh sehingga dapat mempengaruhi 7. American Psychiatric Association.
sistem saraf pusat yang menimbulkan Diagnostic and Statistical Manual of
gangguan perilaku. Oleh karena itu, salah satu Mental Disorder (4th ed Text Revision).
cara mengurangi gangguan perilaku pada anak Washington, DC: American Psychiatric
Association; 2004.

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Anak Autistik

8. Marpaung W. Social Skill Training untuk Bogor; 2008.


Meningkatkan Keterampilan Sosial pada 16. Latifah RE. Studi Konsumsi dan Status Gizi
Anak Autistic Spectrum Disorder [Tesis]. pada Anak Penyandang Gangguan
Medan: Universitas Sumatera Utara; 2014. Spektrum Autisme di Kota Bogor. Bogor:
9. Halgin RP, Susan KW. Psikologi Abnormal: Institut Pertanian Bogor; 2004.
Perspektif Klinis pada Gangguan Psikologi. 17. Millward C, Ferriter M, Calver S, Connell-
Edisi ke-6. Jakarta: Salemba Humanika; Jones G. Gluten- and casein-free diets for
2010. autistic spectrum disorder. Cochrane
10. Widyawati I. Autisme Masa Kanak. Dalam: Database of Systematic Reviews; 2007.
SD Elvira & G Hadisukanto, editor. Buku 18. Sofia AD. Kepatuhan Orang Tua dalam
Ajar Psikiatri. Jakarta: Badan Penerbit Menerapkan Terapi Diet Gluten Free
Fakultas Kedokteran Universitas Casein Free pada Anak Penyandang
Indonesia; 2014. Autisme di Yayasan Pelita Hafizh dan SLBN
11. Kaplan HI, Sadock BJ, Grebb JA. Sinopsis Cileunyi Bandung [Skripsi]. Bandung:
Psikiatri: Ilmu Pengetahuan Perilaku Klinis. Universitas Padjadjaran; 2012.
Jilid 2. Tangerang: Bina Rupa Aksara; 2010. 19. Mukhfi, Nugraheni SA, Kartini A.
12. Sari ID. Nutrisi pada Pasien Autis. CDK. Hubungan Praktek Pengaturan Diet
2009; 36(2): 89–93. dengan Perilaku Emosional pada
13. American Psychiatric Association. Penyandang Autism Spectrum Disorder
Diagnostic and Statistical Manual of (ASD) Usia 3-7 Tahun di Kota Depok. Jurnal
Mental Disorder, Fifth Edition. Kesehatan Masyarakat. 2014;2(2): 132-9.
Washington,DC: American Psychiatric 20. Adams JB. Summary of Dietary,
Association; 2013. Nutritional, and Medical Treatments for
14. Pratiwi RA. Hubungan Skor Frekuensi Diet Autism–based on over 150 published
Bebas Gluten Bebas Casein dengan Skor research studies Summary of Dietary ,
Perilaku Autis. Journal of Nutrition Nutritional , and Medical Treatments for
College. 2014; 3(1): 34–42. Autism. Autism Research Institute; 2013.
15. Syafitri IL. Pengasuhan (Makan, Hidup 21. CormierE, Elder JH. Diet and child behavior
Sehat, dan Bermain), Konsumsi dan Status problems: fact or fiction? Pediatric
Gizi Penderita Autism Spectrum Disorder Nursing. 2007; 33(2): 138–43
(ASD)[Skripsi]. Bogor: Institut Pertanian

Majority | Volume 4 | Nomor 7| Juni 2015| 127


Zygawindi Nurhidayati | Pengaruh Pola Konsumsi Makanan Bebas Gluten Bebas Casein dengan Gangguan Perilaku pada
Anak Autistik

Majority | Volume 4 | Nomor 7| Juni 2015| 128


LITERASI ONLINE UNTUK MENINGKATKAN PENGETAHUAN
IBU DARI ANAK AUTIS

ONLINE AUTISM LITERACY TO ENHANCE KNOWLEDGE OF AUTISM


CHILD MOTHER

Kumala Windya Rochmani1 dan Neila Ramdhani2


1
Fakultas Psikologi, Universitas Mercu Buana Yogyakarta, 2Fakultas psikologi, UGM
1
kumala@mercubuana-yogya.ac.id

Abstrak
Autisme merupakan gangguan perkembangan pervasif yang dapat menimbulkan tekanan yang berat
bagi orangtua. Jika orangtua tidak memiliki pengetahuan tentang anak autis, orangtua cenderung
memiliki penerimaan yang rendah terhadap anak. Internet dapat digunakan sebagai salah satu media
literasi yang menyediakan informasi dan pengetahuan yang beragam, mudah, murah, dan cepat.
Tujuan penelitian ini adalah untuk mengetahui efektivitas intervensi literasi dengan dukungan
internet dalam meningkatkan pengetahuan ibu yang memiliki anak autis. Subjek penelitian adalah 3
orang ibu yang memiliki anak usia 3-8 tahun yang telah didiagnosis autis. Penelitian ini
menggunakan desain metode eksperimen kasus tunggal dengan menerapkan model literasi
kesehatan dengan dukungan internet. Alat ukur yang digunakan untuk mengetahui kondisi
psikologis subjek sebelum dan sesudah intervensi adalah Skala Pengetahuan Autis. Analisis data
dilakukan dengan metode visual inspection dan analisis deskriptif. Nilai mean antara fase baseline
dengan fase intervensi menunjukkan adanya peningkatan pengetahuan subjek. Hasil penelitian ini
menunjukkan bahwa literasi online dapat meningkatkan pengetahuan orangtua yang memiliki anak
dengan autis.

Kata Kunci: literasi autis; media internet; pengetahuan orangtua

Abstract
Autism is a pervasive neurodevelopmental disorder which may cause high pressure to parents. The
parents who have no knowledge about autism tend to have low knowledge about their children
condition. Internet can be used as a literacy media to provide the easy, cheap and fast information
for parents. The aim of this research was to know the effectiveness of internet supported literacy
intervention in enhancing parental parental knowledge who have children with autism. Participants
were 3 mothers with autism diagnosed children and children were about 3 to 8 years old. This
research used single-case experiment by applying internet supported health literacy model. The
measurement used Autism Knowledge Scale. The data was analyzed using visual inspection method
and descriptive analysis. Mean score between baseline phase and intervention increased. Results
suggested that online literacy may enhance knowledge of mother who have children with autism.

Keywords: internet-based literacy, parental knowledge

PENDAHULUAN
Autis menurut istilah ilmiah kedokteran, psikiatri, dan psikologi, termasuk dalam
gangguan perkembangan pervasif (pervasive developmental disorders). Data dari berbagai
media di Indonesia menunjukkan bahwa prevalensi penyandang autisme dibandingkan
dengan jumlah kelahiran normal, dari tahun ke tahun meningkat tajam (Ferry, 2013;

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Hadirani, 2013; Holid, 2002; Masra, 2006; Nky, 2013; Publik, 2012; Sagina, 2013; Sutadi,
2003). Berdasarkan data BPS tahun 2010 anak autis di Indonesia diperkirakan berjumlah
112.000 anak dengan prevalensi autisme 1,68 per 1000 anak pada rentang usia 5-19 tahun.
Menurut Diagnostic and Statistical Manual of Mental Disorder-V (DSM-V), autis
merupakan gangguan perkembangan pervasif yang ditandai dengan kelainan kualitatif pada
interaksi sosial, komunikasi, perilaku, minat, dan aktivitas. Seorang anak dapat terdeteksi
autis sebelum tiga tahun dengan mengamati gejala-gejalanya yaitu hambatan dan gangguan
dalam interaksi dan ketrampilan sosial, bahasa, serta perilaku (Yapko, 2003; Zwaigenbaum,
Brysons, Rogers, & Roberts, 2005). Gejala autis pada setiap anak berbeda-beda dan sangat
kompleks sehingga membutuhkan intervensi terpadu dari orangtua, dokter, psikolog, ahli
gizi, terapis, dan pemerintah (Bisono, 2005; Safaria, 2005).
Hasil penelitian menunjukkan bahwa orangtua yang memiliki anak autis mengalami
tingkat stress yang lebih tinggi dibandingkan orangtua yang memiliki anak hiperaktif, anak
dengan mental retardasi, dan anak dengan cacat fisik (Erguner-Tekinalp & Akkok, 2004).
Stress yang dialami orangtua akan mempengaruhi sikap, perilaku, dan pengasuhan
orangtua terhadap anak, terutama ibu yang memiliki peran utama dalam pengasuhan anak
(Ogretir & Ulutas, 2009).
Penelitian kualitatif tentang penerimaan orangtua terhadap anak autis pernah
dilakukan oleh Arfianata (Arsli, 2006). Penelitian tersebut menyebutkan bahwa faktor-
faktor yang mempengaruhi penerimaan orangtua adalah karakteristik anak, informasi
tentang autis, instrumen yang baik untuk memberikan penanganan (finansial, peralatan,
perlengkapan), kepribadian orangtua, dan spiritualitas. Data yang didapatkan dari
penelitian menyebutkan bahwa orangtua melakukan coping dengan berusaha mendapatkan
informasi tentang autisme dan penanganannya. Mencari informasi dan pengetahuan
merupakan salah satu bentuk coping yang dilakukan orangtua guna mempertahankan
kestabilan dan emosi dan meyesuaikan diri terhadap suatu kejadian negatif (Gray, 2006).
Tingkat pendidikan orangtua yang cukup tinggi, memungkinkan orangtua mencari melalui
berbagai media seperti surat kabar, majalah, buku-buku, seminar, dan internet. Informasi
yang dimiliki orangtua adalah salah satu faktor yang mempengaruhi penerimaan orangtua
(Ogretir & Ulutas, 2009). Langkah-langkah yang dilakukan orangtua untuk memperoleh,
membaca, memahami, dan menggunakan informasi tentang anak autis termasuk kegiatan
yang dapat dikategorikan sebagai langkah-langkah literasi kesehatan.
Literasi kesehatan merupakan kemampuan untuk memperoleh, membaca,
memahami, dan menggunakan informasi kesehatan untuk membuat keputusan yang tepat

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dan mengikuti instruksi pengobatan yang harus dilakukan (Reber & Reber, 2010;
Roundtable on Health Literacy, 2012; Vandenbus, 2007). Seiring dengan perkembangan
teknologi informasi maka internet menjadi salah satu media literasi (Baran, 2004;
Stellefson, Hanik, Chaney, Tennant, & Chavarria, 2011). Orangtua yang tidak memahami
gejala autis dan penanganannya dapat dikategorikan memiliki literasi kesehatan yang
rendah (Grant, 2016). Orangtua yang mendapatkan diagnosis bahwa anaknya memiliki
gejala autis memiliki tingkat stres yang tinggi dan mengalami kesulitan dalam menyaring
informasi untuk menemukan intervensi yang efektif untuk anak dengan autis.
Penggunaan website sebagai sumber utama informasi dalam internet semakin
meningkat. Sebagian besar individu mengakses website untuk mencari informasi kesehatan
secara online (Cline & Haynes, 2001) atau untuk mengikuti proses e-therapy, misalnya
untuk masalah stres (Morrill, 2006), gangguan kecemasan dan depresi (Marks, 2004; Spek
& Viola, 2007), atau masalah keluarga (King, Bambling, Reid, & Thomas, 2006).
Orangtua menggunakan website sebagai sumber informasi serta sumber dukungan
emosional (Cook, Rule, & Mariger, 2003; Kidd, Terry, & Keengwe, 2010; Langas, 2005;
McWilliam & Scott, 2001). Kelebihan website sebagai sumber informasi dan dukungan
emosional (Zaidman-Zait & Jamieson, 2007) adalah: (1) kemudahan mendapatkan
informasi (Pallen, 1995); (2) biaya mengakses informasi murah; (3) informasi dapat
diperoleh setiap saat; (4) orangtua dapat mengakses informasi secara privat dan anonim
(Skinner, Biscope, & Poland, 2003); dan (5) orangtua dapat berinteraksi dengan orangtua
lain melalui berbagai media komunikasi online (Hardey, 1999). Kekurangan website
sebagai sumber informasi berkaitan dengan jumlah informasi yang sangat banyak dan
beragam serta tidak adanya review dari pemerintah atau ahli tentang keakuratan informasi
yang ditampilkan (Martland, 2001; Smith, 1999). Hasil penelitian menunjukkan bahwa
orangtua lebih mempercayai informasi dari website yang dibuat oleh lembaga yang
terpercaya atau profesional daripada informasi yang diberikan orangtua lain yang memiliki
masalah yang sama (Bernhardt dan Felter, 2004; Taylor, Alman, & Manchester, 2001).
Di dalam penelitian ini, peneliti merancang literasi kesehatan Care-Autism dengan
media internet sebagai salah satu alternatif literasi tentang autisme kepada orangtua yang
memiliki anak autis. Literasi kesehatan ini diberi muatan psikoedukasi tentang autism.
Menurut pendekatan intervensi kognitif-perilakuan, individu yang mendapatkan informasi
tentang masalah yang dimilikinya dapat mengalami perubahan kognisi yang diikuti dengan
perubahan emosi dan perubahan perilaku (Sundel & Sundel, 2005). Salah satu intervensi
yang menggunakan pendekatan kognitif-perilakuan adalah psikoedukasi. Psikoedukasi

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dengan subjek orangtua merupakan salah satu bentuk experiential learning (Supratiknya,
2007) dimana orangtua sebagai individu dewasa memiliki kemampuan untuk menerima
dan mengolah informasi secara mandiri. Pada umumnya psikoedukasi untuk orangtua dari
anak autis dilakukan dalam beberapa sesi tatap muka. Namun, ada beberapa hambatan
dalam melaksanakan psikoedukasi tatap muka yaitu keterbatasan waktu, tempat, tenaga, &
biaya (Hidayati, 2012).
Psikoedukasi tatap muka untuk orangtua yang pernah dilakukan bertujuan untuk
meningkatkan kemampuan bahasa dan interaksi anak dengan orangtua (Oosterling dkk,
2010); untuk meningkatkan ketrampilan coping dan menurunkan stress pada ibu dari anak
autis (Erguner-Tekinalp & Akkok; 2004); untuk menurunkan gangguan perilaku pada anak
autis (Bearss, Johnson, Handen, Smith, Scahill, 2012); serta untuk meningkatkan
penerimaan ibu dari anak autis (Ogretir dan Ulutas, 2009).
Peneliti lain mencoba mengatasi keterbatasan psikoedukasi tatap muka melalui
psikoedukasi berbasis internet yang dilakukan oleh Green dkk (2010) serta Vismara,
McCormick, Young, Nadhan, & Monlux (2013). Media yang digunakan meliputi media
narasi, slide presentasi, contoh video, latihan penerapan terapi Applied Behaviour Analysis,
video conferencing serta website. Hasil penelitian tersebut merekomendasikan
digunakannya media internet sebagai alternatif media psikoedukasi pada orangtua.
Sebagian besar materi psikoedukasi untuk orangtua menggunakan pendekatan Applied
Behaviour Analysis dan bertujuan memberikan pengetahuan tentang cara mengenali tanda
dan gejala autisme, penegakan diagnosis, dan penanganan yang perlu diberikan.
Brookman-Frazee dkk memberikan saran agar ada materi tentang manajemen stress untuk
orangtua, kontrol diri, ketrampilan problem-solving, dan cara memperkuat fungsi keluarga
dan memperoleh dukungan sosial (Brookman-Frazee, Stahmer, Baker-Ericzen, & Tsai,
2006).
Berdasarkan uraian sebelumnya, peneliti mengungkapkan bahwa respon orangtua
saat anaknya didiagnosis mengalami autis adalah bingung, cemas, sedih, dan cenderung
menunjukkan penolakan pada anak. Hal ini disebabkan orangtua tidak memiliki
pengetahuan tentang kondisi dan penanganan anaknya, cara untuk melakukan manajemen
diri, serta tidak mengetahui pengalaman orang lain yang memiliki anak autis. Orangtua
yang memiliki anak autis perlu mendapatkan informasi dan pengetahuan agar dapat
memahami kondisi anaknya, menangani masalah yang muncul, serta menunjukkan
penerimaan pada anak (Ogretir & Ulutas, 2009). Psikoedukasi merupakan salah satu
metode untuk memberikan pengetahuan dengan konsep psikoterapi dan re-edukasi (Lukens

PROSIDING SEMINAR NASIONAL 2021 FAKULTAS PSIKOLOGI UMBY | 83


& McFarlane, 2004) sehingga dapat membantu orangtua mengatasi permasalahan yang
muncul.
Kelebihan psikoedukasi adalah fleksibilitas model sehingga dapat disesuaikan
dengan situasi dan kondisi individu (Lukens & McFarlane, 2004). Peneliti menggunakan
pendekatan psikoedukasi dalam bentuk literasi dengan dukungan internet melalui website
dilengkapi dengan konsultasi psikologi melalui facebook. Orangtua yang mengikuti literasi
dengan dukungan internet ini diharapkan mengalami perubahan perilaku. Ritterband dkk.
(2009) memaparkan model perubahan perilaku melalui intervensi berbasis internet. Model
tersebut memuat mekanisme perubahan perilaku yang dipengaruhi oleh adanya
pengetahuan, motivasi untuk berubah, keyakinan dan sikap, pembentukan ketrampilan diri,
restrukturisasi kognitif, dan monitoring diri. Penerimaan pengetahuan yang melibatkan
proses kognitif ditandai menjadi salah satu faktor yang penting karena perubahan perilaku
dapat dipengaruhi oleh proses belajar individu. Proses tersebut dapat dijabarkan dalam
tahapan belajar signifikan yaitu adanya pengetahuan dasar, aplikasi, integrasi, dimensi
manusia, perhatian, dan belajar cara belajar (Fink, 2003). Melalui literasi autis dengan
dukungan internet ini, orangtua diharapkan dapat melakukan proses belajar dan memiliki
pengetahuan untuk memahami kondisi anaknya, menangani masalah yang muncul, serta
menunjukkan penerimaan pada anak.
Berdasarkan uraian di atas peneliti menyusun intervensi literasi dengan dukungan
internet untuk meningkatkan pengetahuan orangtua tentang gejala-gejala autis dan
penanganan yang perlu diberikan pada anak. Hipotesis yang diajukan yaitu literasi dengan
dukungan internet dapat meningkatkan pengetahuan orangtua yang memiliki anak autis.

METODE
Kriteria inklusi penelitian yaitu: (1) ibu dari anak berusia 3-8 tahun yang sudah
didiagnosis autis oleh dokter atau psikolog; anak tersebut merupakan anak pertama atau
kedua; (2) usia subjek 25-45 tahun; (3) pendidikan minimal SMA; (4) mampu
mengoperasikan komputer dan internet tanpa bantuan orang lain saat mengakses website,
email, dan facebook; (5) memiliki skor pengetahuan autis rendah hingga sedang.
Alat ukur yang digunakan adalah Skala Pengetahuan Autis (10 item dengan α =
0,743). Instrumen pelengkap penelitian adalah informed consent; buku catatan harian;
lembar observasi sesi intervensi; lembar monitoring website; lembar evaluasi penelitian;
dan panduan wawancara.

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Penelitian ini menggunakan desain penelitian subjek tunggal (single-subject design)
dengan n=3 orang. Desain penelitian yang digunakan adalah ABA Single-case Experiment
Design (Barlow & Hersen, 1984; Sunanto, Takeuchi, Nakata, 2005). Pengukuran yang
dilakukan yaitu sebelum tritmen, setelah tritmen, dan saat follow-up. Data penelitian
dilengkapi dengan analisis deskriptif berdasarkan catatan harian serta data wawancara.
Tujuan dari literasi ini adalah memberikan informasi kepada subjek tentang
pengetahuan dasar autis, pengetahuan tentang manajemen diri, serta pengetahuan tentang
pengalaman orangtua lain serta pengalaman anak autis. Intervensi diberikan berdasarkan
Modul Literasi Care-Autis yang dilengkapi dengan website Care-Autis
(www.careautism.wordpress.com) serta layanan konsultasi psikologi melalui facebook
care-autism.
Intervensi dilengkapi dengan wawancara tatap muka dengan fasilitator selama dua
kali saat baseline A1 dan satu kali saat follow-up. Saat intervensi subjek mengakses website
Care-Autis selama 1-1,5 jam per hari dalam waktu 8 kali sesi mengakses website. Subjek
membuat kesepakatan dengan observer untuk menentukan waktu/jadwal dalam mengakses
website. Subjek dapat mengirim email untuk konsultasi dengan psikolog selama 24 jam
dan balasan dari psikolog dikirim setiap hari Senin-Jumat pukul 08.00. Intervensi Care-
Autis diberikan oleh 1 (satu) orang fasilitator dengan kriteria (1) psikolog atau mahasiswa
Magister Profesi Psikologi bidang klinis atau pendidikan; (2) berpengalaman menangani
anak autis; dan (3) mampu menggunakan komputer dan internet.
Penyusunan dan validasi modul dilakukan dalam beberapa tahap yaitu studi literatur;
wawancara dengan orangtua dari anak autis; penilaian profesional (professional judgement)
dengan 5 orang psikolog; serta uji coba modul pada 2 (dua) orang ibu dengan kriteria
inklusi yang sama dengan subjek penelitian. Tahap selanjutnya adalah seleksi subjek
penelitian yang dilakukan pada sejumlah ibu yang menyekolahkan anaknya di SLB BA
Yogyakarta. Setelah mendapatkan subjek sesuai kriteria inklusi maka proses penelitian pun
dimulai. Fase baseline 1 (A1) untuk masing-masing subjek dimulai pada waktu yang
berbeda dan berlangsung selama waktu yang berbeda-beda. Setelah fase baseline A1 selesai,
subjek diberikan pre-test dengan mengisi skala pengetahuan autis. Fase intervensi (B)
dilakukan di ruang guru SLB BA Yogyakarta selama subjek menunggu anaknya sekolah.
Saat intervensi, subjek membaca pesan dari psikolog melalui facebook, membaca materi
dalam website, dan menyelesaikan tugas yang diberikan. Setelah fase intervensi selesai,
subjek diberikan post-test dengan mengisi skala pengetahuan autis. Pengukuran pada fase

PROSIDING SEMINAR NASIONAL 2021 FAKULTAS PSIKOLOGI UMBY | 85


baseline A2 (follow-up) dilakukan dengan meminta subjek mengisi skala pengetahuan
autis serta melakukan 1 (satu) kali wawancara follow-up dengan fasilitator.
Analisis data kuantitatif menggunakan metode visual inspection untuk menganalisis
tingkat stabilitas (level stability), kecenderungan arah (trend/slope), serta tingkat perubahan
data (level change) (Kazdin, 1982; Barlow & Hersen, 1984; Sunanto, Takeuchi, Nakata,
2005). Asumsi dalam untuk analisis tingkat stabilitas adalah jika 80%-90% data berada
pada 15% di atas mean maka dikatakan stabil. Analisis kecenderungan arah menggunakan
metode split-middle nilai median masing-masing belahan data. Analisis tingkat perubahan
data antar kondisi (level change) dihitung dari selisih antara skor terakhir pada kondisi
pertama dengan skor pertama pada kondisi kedua. Analisis deskriptif dari hasil wawancara
digunakan untuk mendapatkan gambaran dinamika psikologis subjek.

HASIL DAN PEMBAHASAN


Skala yang digunakan dalam penelitian adalah skala pengetahuan autis untuk
mengetahui besarnya perubahan pengetahuan orangtua. Hasil pengukuran skala penelitian
dapat dilihat pada Gambar 1. Hasil pengukuran pengetahuan autis menunjukkan adanya
peningkatan pengetahuan autis pada ketiga subjek dari fase pre-test ke fase post-test serta
tidak ada perubahan dari fase post-test ke fase follow-up. Adanya peningkatan pengetahuan
ini menunjukkan bahwa ada proses belajar dan perubahan tingkat pengetahuan pada ketiga
subjek.
Gambar 1. Hasil Pengukuran Skala Pengetahuan Autis

Analisis data visual dilakukan pada data catatan harian perilaku ibu terhadap anak
yang diisi oleh subjek selama 39 hari. Data catatan harian ibu berupa checklist perilaku ibu
yang terdiri dari dua bagian item yaitu perilaku positif dan perilaku negatif. Item perilaku
positif yaitu mencium anak, memeluk anak, memuji anak, menemani anak melakukan
kegiatan, dan bermain bersama anak. Item perilaku negatif yaitu menghindari anak,

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mengalihkan pandangan dari anak, mencubit anak, memukul anak, dan memarahi anak
secara verbal. Subjek memberikan penilaian pada diri sendiri terhadap perilakunya pada
anak dengan pilhan penilaian tidak pernah, jarang, kadang-kadang, sering, selalu. Penilaian
untuk perilaku positif bergerak dari skor 1 untuk kriteria tidak pernah, sampai skor 5 untuk
kriteria selalu. Penilaian untuk perilaku negatif bergerak dari skor 5 untuk kriteria tidak
pernah, sampai skor 1 untuk kriteria selalu. Pergerakan skor perilaku ibu pada anak dapat
dilihat pada gambar 2.
Gambar 2. Skor Checklist Perilaku Ibu Pada Anak

Data dari catatan harian subjek juga digunakan untuk melakukan analisis visual
terhadap tingkat stabilitas, tingkat kecenderungan arah (slope), dan tingkat perubahan
penerimaan orangtua. Hasil analisis ini digunakan sebagai keterangan tambahan hasil
analisis skala penelitian. Analisis stabilitas variabel menunjukkan tingkat stabilitas perilaku
ketiga subjek pada fase A1 dan fase A2 adalah stabil. Analisis kecenderungan arah (slope)
dengan metode split middle menunjukkan arah dan tingkat perubahan karena pengaruh
intervensi.
Pada Ibu A, saat fase A1 ada penurunan median dari 49 menjadi 47, saat fase B ada
peningkatan median dari 51 menjadi 55, dan saat fase A2 ada peningkatan median dari 49
menjadi 50. Tingkat perubahan Ibu A dari fase A1 ke fase B menunjukkan peningkatan
sebesar 4 poin dengan arah (+) atau membaik. Pada Ibu B, saat fase A1 ada penurunan
median dari 50 menjadi 48, saat fase B ada peningkatan median dari 52 menjadi 56, dan
saat fase A2 ada peningkatan median dari 48 menjadi 51. Tingkat perubahan Ibu B dari
fase A1 ke fase B menunjukkan peningkatan sebesar 3 poin dengan arah (+) atau membaik.
Pada Ibu C, saat fase A1 tidak ada perubahan arah, median tetap sebesar 50, saat fase B
ada peningkatan median dari 53 menjadi 56, dan saat fase A2 ada penurunan median dari
51 menjadi 50. Tingkat perubahan Ibu C dari fase A1 ke fase B menunjukkan peningkatan
sebesar 7 poin dengan arah (+) atau membaik.

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Literasi dengan daya dukung internet dalam penelitian ini secara umum dibagi
menjadi 3 materi literasi yaitu literasi tentang autis, literasi tentang manajemen diri, dan
berbagi cerita dan pengalaman. Subjek juga dapat berkonsultasi dengan psikolog mengenai
penanganan masalah mereka dalam keseharian, baik yang berkaitan dengan anak, keluarga,
maupun hal-hal yang lain. Literasi tentang autis sangat diperlukan bagi ibu dari anak autis
yang selalu dituntut untuk mampu mengasuh, mendampingi, dan menangani masalah anak
sekaligus masalah rumah tangga lainnya. Situasi dan kondisi anak, keluarga, dan latar
belakang yang berbeda-beda di antara subjek mempengaruhi kondisi internal orangtua
yang memiliki anak autis (Erguner-Tekinalp & Akkok, 2004). Proses belajar orangtua
terhadap anaknya yang mengalami autis mudah mengalami perubahan (Rohner, Khaleque,
& Cournoyer, 2007). Hal ini tampak pada dinamika penerimaan orangtua yang dialami
subjek penelitian. Ibu A yang tinggal dengan suami dan ibu mertua lebih banyak merasakan
permasalahan dengan ibu mertua daripada permasalahan menangani anak. Ibu B yang
menjadi janda dan tinggal dengan orangtua merasa kurang mendapatkan daya dukung
keluarga karena orangtua dan keluarganya cenderung menyerahkan seluruh pengasuhan
dan pendampingan anak pada dirinya dan enggan melibatkan diri untuk membantu
mengasuh anaknya. Ibu C yang tinggal bersama suami dan kedua anaknya merasa kesulitan
untuk mengasuh anak dan menyelesaikan pekerjaan rumah tangga. Dinamika
permasalahan yang dialami masing-masing subjek berbeda-beda, tergantung dari berbagai
macam faktor yang mempengaruhi (Rohner, Cournoyer, & Khaleque, 2007; Arsli, 2006;
Gray, 2006). Hal ini juga mempengaruhi cara dan proses subjek memperoleh informasi
kemudian mengolahnya untuk mengatasi permasalahan yang ada (Oosterling dkk., 2010).
Data yang didapat dari penelitian ini mengungkapkan bahwa subjek penelitian tidak
memiliki informasi tentang autis saat menerima diagnosis dari dokter. Pada proses
selanjutnya, subjek penelitian berusaha mencari informasi sebanyak-banyaknya sesuai
dengan kemampuan dan daya dukung dari lingkungan yang mereka miliki. Ibu A aktif
mencari informasi melalui diskusi dengan dokter, terapis, membaca buku, mengakses
informasi di internet, mengikuti diskusi di facebook atau mailing list. Ibu A juga aktif
berdiskusi dan berbagi pengalaman dengan ibu-ibu lain di sekolah anaknya. Ibu B dan Ibu
C kurang memiliki kemampuan dan daya dukung seperti Ibu A sehingga subjek hanya
berusaha mencari informasi melalui dokter, terapis, guru atau cerita dari ibu-ibu yang lain.
Hal tersebut menjadi landasan awal pengetahuan yang dimiliki oleh subjek.
Berdasarkan analisis skala pengetahuan autis, masing-masing subjek penelitian
mengalami perubahan tingkat pengetahuan dengan arah membaik yaitu adanya kenaikan

88 | PROSIDING SEMINAR NASIONAL 2021 FAKULTAS PSIKOLOGI UMBY


skor pengetahuan autis. Hal ini menunjukkan adanya perubahan pengetahuan baru yang
diharapkan diikuti dengan perubahan sikap, emosi, dan perilaku. Adanya perubahan
pengetahuan menunjukkan bahwa ada proses belajar yang terjadi pada subjek penelitian.
Setiap subjek melakukan proses belajar yang berbeda-beda yang dapat dianalisis dengan
tahapan belajar signifikan yaitu adanya pengetahuan dasar, aplikasi, integrasi, dimensi
manusia, perhatian, dan belajar cara belajar (Fink, 2003). Ibu A merasa sangat terbantu
dengan artikel berbagi cerita dari sudut pandang anak. Selama ini subjek berusaha mencari
informasi sebanyak-banyaknya tentang autis, mulai dari gejala hingga penanganan. Namun
ternyata dari sekian banyak informasi tersebut, tidak dapat membantu subjek untuk
memahami apa yang sebenarnya dirasakan, dipikirkan, dan dialami oleh anaknya. Setelah
mengikuti intervensi, subjek menyadari bahwa penanganan yang selama ini diberikan pada
anak tidak efektif karena subjek kurang bisa memahami pola pikir, emosi, dan pola perilaku
anaknya. Hal ini juga dialami oleh Ibu B yang mendapatkan manfaat dengan diingatkan
kembali tentang gejala-gejala autis dan penanganan dasar yang perlu diberikan sekaligus
pengalaman yang diberikan dari sudut pandang anak autis. Ibu C mendapatkan insight
dengan memahami bahwa perilaku anaknya sangat dipengaruhi oleh respon ibu terhadap
perilaku anaknya. Subjek juga mulai memahami bahwa pola pengasuhan yang diterapkan
pada anaknya dipengaruhi oleh pola asuh yang didapatkan dari neneknya saat Ibu C masih
kecil. Pemahaman ini subjek peroleh setelah membaca dan memahami informasi literasi
pada bagian manajemen orangtua dan berbagi cerita.
Subjek menyatakan bahwa sudah pernah mengetahui atau mendapatkan informasi
yang sama tetapi informasi tersebut lebih mudah dipahami dan diterima kembali ketika
disajikan bersama informasi tentang pengalaman dari orangtua lain serta pengalaman dari
sudut pandang anak. Pengetahuan lain yang didapatkan adalah tentang manajemen diri
untuk mengatasi permasalahan yang berkaitan dengan kondisi internal dan ekternal subjek.
Selama ini subjek penelitian hanya mencoba cara-cara umum untuk mengatasi masalah
harian yang muncul, misalnya stres harian, konflik dengan keluarga, harapan yang tidak
tercapai atau masalah lainnya. Setelah mengikuti intervensi, subjek penelitian mengetahui
cara-cara yang dapat dilakukan untuk mengatasi permasalahan hidup sehari-hari yang
mereka hadapi. Hal ini menunjukkan bahwa ibu dari anak autis tidak hanya membutuhkan
informasi tentang gejala dan penanganan anak autis, tetapi juga cara mengatasi stress,
menyelesaikan masalah, serta membangun dukungan dari keluarga. Ibu dari anak autis juga
membutuhkan informasi tentang pengalaman orangtua lain serta pengalaman anak autis
menjalani kehidupannya.

PROSIDING SEMINAR NASIONAL 2021 FAKULTAS PSIKOLOGI UMBY | 89


Peningkatan pengetahuan subjek penelitian dapat dipengaruhi dari metode intervensi
yaitu psikoedukasi berbentuk literasi dengan dukungan internet. Menurut Ritterband dkk
(2009), mekanisme perubahan perilaku yang dipengaruhi oleh intervensi berbasis internet
meliputi beberapa aspek yaitu pengetahuan, motivasi, pembentukan ketrampilan, dan
monitoring diri. Psikoedukasi dalam intervensi ini lebih menitikberatkan pada proses re-
edukasi dengan memberikan pengetahuan dan pemahaman melalui literasi dalam website
sedangkan proses psikoterapi melalui konsultasi psikologi dan self-monitoring dalam
catatan harian kurang dapat berjalan dengan optimal. Hal ini dapat menyebabkan
mekanisme perubahan perilaku subjek kurang maksimal. Walaupun demikian, secara
kualitatif, masing-masing subjek penelitian mengalami proses belajar, menemukan insight
dan melakukan perubahan perilaku sesuai permasalahan, situasi, dan kondisi yang dihadapi.

KESIMPULAN
Berdasarkan uraian di atas, hasil penelitian menunjukkan adanya perubahan variabel
dependen yaitu adanya peningkatan pengetahuan orangtua terhadap anak autis. Peneliti
menyadari bahwa penelitian ini memiliki keterbatasan. Salah satu keterbatasan adalah
penggunaan internet yang belum maksimal karena keterbatasan kemampuan subjek dalam
mengakses website, facebook, dan menggunakan laptop. Keterbatasan tersebut
menyebabkan internet hanya digunakan dalam penyajian materi literasi tetapi kurang dapat
dimanfaatkan untuk menulis catatan harian dan menyelesaikan tugas harian. Keterbatasan
berkaitan kriteria inklusi subjek adalah kesetaraan tingkat pengetahuan dan kemampuan
subjek dalam mengakses website dan menggunakan komputer/laptop tidak diukur.
Keterbatasan berkaitan bentuk intervensi adalah adanya kegiatan menulis. Pada subjek
yang tidak terbiasa menulis mengalami kesulitan menuliskan apa yang dipikirkan atau
dirasakan.
Keterbatasan tersebut dapat diatasi oleh peneliti lain dengan lebih cermat memilih
subjek penelitian, melakukan modifikasi buku catatan harian untuk self-monitoring,
menyusun artikel literasi dengan bahasa yang singkat, jelas, dan mudah dipahami
dilengkapi gambar dan video yang sesuai, serta mengoptimalkan internet sebagai media
intervensi. Kemajuan teknologi informasi saat ini memberikan peluang yang sangat besar
bagi pengembangan intervensi psikologi berbasis internet, baik untuk layanan psikoedukasi,
konsultasi maupun terapi psikologi. Oleh karena itu peneliti berharap pada para akademisi,
praktisi, sekolah, masyarakat, maupun pemerintah untuk mulai menggunakan teknologi

90 | PROSIDING SEMINAR NASIONAL 2021 FAKULTAS PSIKOLOGI UMBY


informasi dalam melakukan edukasi dan intervensi tentang autis pada khususnya maupun
kesehatan mental pada umumnya.

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8

Arch Dis Child: first published as 10.1136/adc.2004.062083 on 29 April 2005. Downloaded from http://adc.bmj.com/ on October 10, 2021 at UK NHS and HE Athens Access. Protected by
ORIGINAL ARTICLE

Systematic review of prevalence studies of autism


spectrum disorders
J G Williams, J P T Higgins, C E G Brayne
...............................................................................................................................
Arch Dis Child 2006;91:8–15. doi: 10.1136/adc.2004.062083

Aim: To quantitatively examine the influence of study methodology and population characteristics on
prevalence estimates of autism spectrum disorders.
Methods: Electronic databases and bibliographies were searched and identified papers evaluated against
See end of article for inclusion criteria. Two groups of studies estimated the prevalence of typical autism and all autism spectrum
authors’ affiliations disorders (ASD). The extent of variation among studies and overall prevalence were estimated using meta-
.......................
analysis. The influence of methodological factors and population characteristics on estimated prevalence
Correspondence to: was investigated using meta-regression and summarised as odds ratios (OR).
Dr J G Williams, Results: Forty studies met inclusion criteria, of which 37 estimated the prevalence of typical autism, and 23
Department of Public
Health and Primary Care, the prevalence of all ASD. A high degree of heterogeneity among studies was observed. The overall
University of Cambridge, random effects estimate of prevalence across studies of typical autism was 7.1 per 10 000 (95% CI 1.6 to
Forvie Site, Robinson 30.6) and of all ASD was 20.0 per 10 000 (95% CI 4.9 to 82.1). Diagnostic criteria used (ICD-10 or
Way, Cambridge CB2
2SR, UK; j.g.williams.97@ DSM-IV versus other; OR = 3.36, 95% CI 2.07 to 5.46), age of the children screened (OR = 0.91 per year,
cantab.net 95% CI 0.83 to 0.99), and study location (e.g. Japan versus North America; OR = 3.60, 95% CI 1.73 to
7.46) were all significantly associated with prevalence of typical autism. Diagnostic criteria, age of the
Accepted sample, and urban or rural location were associated with estimated prevalence of all ASD.
22 December 2004
Published Online First
Conclusions: Sixty one per cent of the variation in prevalence estimates of typical autism was explained by
29 April 2005 these models. Diagnostic criteria used, age of children screened, and study location may be acting as
....................... proxies for other study characteristics and require further investigation.

copyright.
T
he prevalence of autistic disorder is now considered to be Study selection
around 10 per 10 000, and the prevalence of pervasive Identified papers were examined against criteria for inclusion
developmental disorders, 27.5 per 10 000. These are (box 2). The paper itself was examined if the abstract was
derived from studies which have estimated prevalences of
autistic disorder ranging from 0.7 to 72.6 per 10 000.1 An
increase in prevalence estimates has been observed over time, Box 1: Search strategy for identifying
the reasons for which are not clear and may include: changes prevalence studies
in study methodology; a genuine rise in autism risk factors;
increase in services available, including diagnostic; increased MEDLINE (PubMed) (searched 13/04/04)
awareness among educational and clinical professionals; and Years (1966–2004):
growing acceptance that autism can coexist with a range of (‘‘Autistic-Disorder’’/all subheadings [MeSH] OR
other conditions.1–4 ‘‘Asperger-Syndrome’’/all subheadings [MeSH] OR
True variation in prevalence could generate aetiological ‘‘Schizophrenia-Childhood’’/all subheadings [MeSH] and
hypotheses for autism and it is vital to understand what (PY = 1966–1970) OR autis* (free text term)) AND
underpins the variation. Accurate estimates of the true (‘‘Prevalence-‘‘/all subheadings [MeSH] OR ‘‘Cross-
prevalence are of value in planning diagnostic and interven- Sectional-Studies’’/all subheadings [MeSH] OR ‘‘Mass-
tion services. Screening’’/all subheadings [MeSH] OR ‘‘Multiphasic-
Several narrative reviews have been conducted. This paper Screening’’/all subheadings [MeSH]).
uses systematic and quantitative methods to examine reasons
EMBASE (Excerpta Medica Database) (searched 13/04/04)
for variation in prevalence estimates. The aims are to assess
(BIDS EMBASE, via Ovid, copyright 2003)
the degree of variation among prevalence studies of autism,
Years (1980–2004):
and to provide an overall summary of prevalence diversity
(exp` autism/ OR exp infantile autism/ OR exp Asperger
taking into account among-study variance using meta-
syndrome/ OR autism.mp1 (as keyword) OR Asperger.mp
analysis. Aspects of study methodology and population
(as keyword)) AND (exp prevalence/ OR exp mass screen-
characteristics are then examined using meta-regression to
ing/ OR exp screening/ OR cross-sectional.mp (as key-
investigate their influence on prevalence estimates. word)) NOT (genetic screening/exp OR genetic screen.mp
(as keyword).
METHODS
Literature searches MeSH (Medical Subjects Headings), The National Library of
Two databases, MEDLINE and EMBASE, were systematically Medicine controlled vocabulary for indexing articles in
searched by the first author (box 1). In addition, bibliogra- PubMed; `exp, explode term (search under all subheadings);
phies of previous reviews1 5 6 were examined to identify 1mp, uses the database thesaurus search term.
published prevalence studies.

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Prevalence studies of autism spectrum disorders 9

Arch Dis Child: first published as 10.1136/adc.2004.062083 on 29 April 2005. Downloaded from http://adc.bmj.com/ on October 10, 2021 at UK NHS and HE Athens Access. Protected by
insufficiently clear. Where there was more than one paper for the true prevalence was calculated as the mean of
published on a particular study, the most recent was included logits ¡ 1.96 t, where t is the among-study standard
in the review. deviation.11

Data extraction Investigation of sources of heterogeneity


Methods and population characteristics reported across most The potential influence of covariates on the prevalence
studies were selected for data extraction. The first author estimates was investigated using a random effects regression
extracted and coded the data. In studies using different model, thus taking account of among-study variance, using
diagnostic criteria, prevalence data based on the more the metareg command in STATA.12 The regression coefficients
recently published diagnostic criteria were extracted. The represent log odds ratios, which are presented as odds ratios
studies formed two groups: those that assessed the pre- with 95% confidence intervals.
valence of classic autism, or autistic disorder, known here as A multivariate meta-regression model was constructed to
‘‘typical autism’’; and those that assessed the prevalence of investigate which covariates were associated with prevalence
autism spectrum disorders (ASD) or all pervasive develop- estimates if there was adjustment for other study covariates.
mental disorders, known here as ‘‘all ASD’’. Assessments of The fit of each model was assessed using the percentage of
risk of bias included reporting of refusal rates and the among-study variance explained ((12(t2 in model/t2 in
reliability of screen and assessment procedures. model with no covariates))6100), together with a signifi-
cance test for each introduced variable (T = coefficient/SE,
Analysis related to the t-distribution). The models were constructed
In the basic tables, crude prevalence estimates (number of using a forward stepwise procedure as described in the
cases/sample size) were presented, along with standard results section. For each model a maximum number of
errors. For all meta-analyses and meta-regressions, preva- covariates was set at n/10 where n was the number of studies,
following standard recommendations for model size relative
lence estimates were transformed to logits to
to sample size.13
improve their statistical properties. These were later back-
transformed to prevalences and expressed as cases per 10 000
RESULTS
people.
Studies identified
Literature searches identified 670 papers (including dupli-
Description of heterogeneity among studies and cates). After exclusion through comparison of titles and
summary of prevalence abstracts against inclusion criteria, 77 papers were identified
Forest plots8 were used to visualise the extent of hetero- for detailed examination. Thirty seven papers were excluded,
geneity among studies. Two statistical methods were used to including ten on the basis of inclusion criterion 2 (box 2), ten
quantify the variation. A standard test for heterogeneity on the basis of criterion 4, nine on the basis of 6, and one on

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examined the null hypothesis that the true prevalences are the basis of 7. In addition, four papers did not have detailed
identical in every study. Since heterogeneity was expected a English summaries, one was not peer reviewed, and two were
priori, this was supplemented with a measure of the degree of untraceable. Of these seven potentially eligible studies, four
inconsistency across studies, I2.9 I2 describes the proportion of were conducted in Japan, one in the USA, one in France, and
variation in prevalence estimates that is due to genuine one in Sweden.
variation in prevalences rather than sampling error. It is Forty papers met inclusion criteria, of which 37 gave
expressed as a percentage, with 0% indicating consistency. estimates for typical autism and 23 for all ASD (table 1). The
The random effects model assumes the study prevalences study sample sizes ranged from 826 to 4 590 333 (med-
follow a normal distribution, allowing for among-study ian = 48 705). Only 17 (40%) studies reported the refusal rate
variation.10 The usual confidence interval for the mean in at the screen phase of the study, and 13 (33%) at the
the random effects model does not take among-study assessment stage. Six (15%) studies reported investigating
variance into account, so is deceptively narrow when there the reliability of their screen method, and 11 (26%) studies
is substantial variation across studies. Instead, a 95% interval stated that the inter-rater reliability for the diagnostic
assessment had been investigated. Many studies did not
report refusal rates and reliability, so these covariates could
Box 2: Inclusion criteria not be included in further analyses.

(1) Primary research Description of heterogeneity among studies and


(2) A geographically and temporally defined population summary of prevalence
(3) Cross-sectional study or data, or first phase of a There was clearly wide variation in the prevalence estimates
longitudinal study of typical autism (fig 1) and an increase in prevalence
(4) Defined diagnostic criteria stated for autism or autism estimates over time. The Q statistic was very large
spectrum disorder (Q = 1947.6, df = 36, p , 0.001; I2 = 98.2%), showing that
there was a great deal of variation among the studies. There
(5) Includes individuals under 18 years old
was also a high degree of heterogeneity among estimates of
(6) Initial selection in a wide range of children in the all ASD (fig 2) (Q = 1577.7, df = 22, p , 0.001; I2 = 98.6%).
general population, or in a clinical setting The back-transformed mean of the random effects dis-
(7) Final identification of cases based on clinical or other tribution for studies of typical autism was 7.1 per 10 000
diagnostic assessment of selected children (95% interval for true prevalences: 1.6 to 30.6) and for studies
(8) Published in English, or with detailed summaries in of all ASD was 20.0 per 10 000 (95% interval for true
English prevalences: 4.9 to 82.1).
(9) Peer reviewed paper or conference presentation
(10) Includes prevalence data Investigation of sources of heterogeneity
(criteria adapted from Wing7) Two studies were excluded from the regression analyses:
either the published paper was not available,16 or insufficient

www.archdischild.com
10

Table 1 Summary of prevalence studies of autism spectrum disorders (42 studies)


Typical autism All ASD

Prospective(P)/ Prevalence
Publ. Sample Screen retrospective (R) Diagnostic estimate (per Diagnostic Prevalence estimate
Ref. year First author Country Sample size Area Age (years) screened1 methods assessment criteria used 10 000) (SE) criteria used (per 10 000) (SE)

www.archdischild.com
14 1966 Lotter UK 78 000 Urban 8–10 P Q P Kanner 4.5 (0.76) – –
15 1970 Treffert USA 899 750 Mixed 0–12 C R R Kanner 0.7 (0.09) – –
16 1970 Brask Denmark 46 500 Urban 2–14 S – – Kanner 4.3 (0.96) – –
17 1979 Wing UK 35 000 Urban 0–15 C R P Kanner 4.9 (1.18) Triad 21.2 (2.46)
18 1982 Hoshino Japan 609 848 Mixed 0–18 P L P Kanner 2.33 (0.20) – –
19 1983 Ishii Japan 34 987 Urban 6–12 P L P Rutter 16.0 (2.14) – –
20 1983 Bohman Sweden 69 000 Mixed 0–20 P L P Rutter 3.0 (0.66) Rutter 5.6 (0.9)
21 1984 McCarthy Ireland 65 000 Mixed 8–10 S R R Kanner 4.3 (0.81) – –
22 1984 Gillberg Sweden 128 584 Mixed 4–18 P L P Rutter 2.0 (0.39) Rutter 3.9 (0.55)
23 1986 Steinhausen Germany 279 616 Urban 0–15 S L R Rutter 1.9 (0.26) – –
24 1986 Steffenburg Sweden 42 886 Mixed 0–9 P L P DSM-III 4.7 (1.05) DSM-III 6.9 (1.27)
25 1987 Burd USA 180 986 Mixed 2–18 C L P DSM-III 1.2 (0.26) DSM-III 3.3 (0.43)
26 1987 Matsuishi Japan 32 834 Urban 4–12 P R P DSM-III 15.5 (2.17) – –
27 1988 Tanoue Japan 95 394 Rural 7 P C P DSM-III 13.8 (1.20) – –
28 1988 Bryson Canada 20 800 Mixed 6–14 P Q P DSM-III 1.9 (0.96) Denkla Triad 10.1 (2.2)
29 1989 Ritvo USA 526 514 Mixed 3–17 P L P DSM-III 2.92 (0.24) – –
30 1989 Sugiyama Japan 11 320 Urban 1.5 P C P DSM-III 13.0 (3.37) – –
31 1989 Cialdella France 135 180 Urban 5–9 C L R DSM-III 5.1 (0.61) DSM-III 10.8 (0.89)
32 1991 Gillberg Sweden 78 102 Mixed 4–13 C L P DSM-III-R 7.0 (0.95) DSM-III-R 9.4 (1.1)
33 1992 Ohtaki Japan 35 366 Mixed 6–14 S R P DSM-III-R 13.9 (1.98) – –
34 1992 Fombonne France 274 816 Mixed 9 & 13 C R R ICD-9 4.9 (0.42) – –
35 1993 Herder Norway 50 909* – 1–17 C – – DSM-III-R 5.5 (1.04) – –
36 1996 Honda Japan 8 537 Urban 5 P C P ICD-10 21.1 (4.97) – –
37 1997 Arvidsson Sweden 1 941 Mixed 3–6 P C P ICD-10 31 (12.6) ICD-10 46 (15.36)
38 1997 Webb UK 73 300 Mixed 3–15 P L P DSM-III-R 7.2 (0.98) – –
39 1997 Fombonne France 325 347 Mixed 6–16 C R R ICD-10 5.35 (0.41) ICD-10 16.29 (0.71)
40 1998 Sponheim Norway 65 688 Mixed 3–14 P L P ICD-10 3.8 (0.76) ICD-10 5.2 (0.89)
41 1999 Kadesjo Sweden 826 Urban 6–7 P L P ICD-10 60 (26.87) Gillberg’s criteria 121 (38.04)
42 2000 Powell UK 16 049* Mixed 0 to ,5 S R R DSM-III-R or 16.2 (3.17) ICD-10 33.7 (1.48)
ICD-10**
43 2000 Kielinen Finland 152 732 Mixed 3–18 C R R ICD-10 5.6 (0.61) ICD-10 13.9 (0.95)
44 2000 Baird UK 16 235 Urban 1.5 P Q (CHAT) P ICD-10 30.8 (4.35) ICD-10 57.9 (5.95)
45 2001 Magnusson Iceland 43 153 Mixed 5–14` P C R ICD-10 8.6 (1.41) ICD-10 13.2 (1.75)
46 2001 Bertrand USA 8 896 Urban 3–10 P R P (where possible) DSM-IV 40.0 (6.69) DSM-IV 67 (8.65)
47 2001 Chakrabarti UK 15 500 Mixed 2.5–6.5 P C P DSM-IV 16.8 (3.29) DSM-IV 62.6 (6.34)
48 2002 Croen USA 4 590 333 Mixed 0–12 S R R DSM-III & 11.0 (0.15) – –
DSM-IV
49 2003 Lingam UK 186 206 Mixed 5–14 S R R ICD-10 14.9 (0.89) ICD-10 30.4 (1.28)
50 2004 Tebruegge UK 2 536 Mixed 8–9 P R R ICD-10 23.7 (9.7) ICD-10 82.8 (18.0)
ASD papers
51 2001 Fombonne UK 10 438 Mixed 5–15 P Q (DAWBA) P – – DSM-IV and ICD- 26.1 (5.0)
10 (excl Rett’s)
52 2002 Scott UK 43 472 Mixed 5–11 P L R – – ICD-10 57.0 (3.61)
53 2003 Yeargin-Allsopp USA 289 456 Urban 3–10 C R R – – DSM-IV 34 (1.08)

*Estimated from number of cases and prevalence estimate; Cohort first screened at 18 months, followed up until age 7–8 years; `Data from an older cohort also included in the study, but excluded from these analyses; 1Sample screened: P,
whole population; C, general clinical services; S, specialist clinical/educational services; Screen methods: C, routine checks; L, letter to elicit referrals; Q, questionnaires/interview; R, records (CHAT, Checklist for Autism in Toddlers; DAWBA,
Development and Well-Being Assessment); **ICD-10 used for analysis; DSM-IV used for analysis.
Williams, Higgins, Brayne

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Prevalence studies of autism spectrum disorders 11

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Study Study

Lotter, 1966 Wing, 1979


Treffert, 1970 Bohman, 1983
Brask, 1970 Gillberg, 1984
Wing, 1979 Steffenburg, 1986
Hoshino, 1982 Burd, 1987
Ishii, 1983 Bryson, 1988
Bohman, 1983 Cialdella, 1989
McCarthy, 1984 Gillberg, 1991
Gillberg, 1984 Arvidsson, 1997
Steinhausen, 1986 Fombonne, 1997
Steffenburg, 1986 Sponheim, 1998
Burd, 1987 Kadesjo, 1999
Matsuishi, 1987 Powell, 2000
Tanoue, 1988 Kielinen, 2000
Bryson, 1988 Baird, 2000
Ritvo, 1989 Magnusson, 2001
Sugiyama, 1989 Chakrabarti, 2001
Ciadella, 1989 Bertrand, 2001
Gillberg, 1991 Fombonne, 2001
Ohtaki, 1992 Scott, 2002
Fombonne, 1992 Lingam, 2003
Herder, 1993 Yeargin-Allsopp, 2003
Honda, 1996 Tebruegge, 2004
Arvidsson, 1997
Webb, 1997
Fombonne, 1997 0.5 1 2.5 5 10 25 50 100
Sponheim, 1998 per 10 000 (log scale)
Kadesjo, 1999
Powell, 2000 Figure 2 Forest plot of prevalence estimates and 95% confidence
Kielinen, 2000 intervals from studies of all ASD, log transformed (n = 23).
Baird, 2000
Magnusson, 2001
study was on a population or clinic based sample, were not
Bertrand, 2001
Chakrabarti, 2001 significantly associated with prevalence. Urban location gave

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Croen, 2002 rise to higher prevalence estimates than studies carried out in
Lingam, 2003 rural or mixed locations (OR = 1.90, 95% CI 1.10 to 3.25;
Tebruegge, 2004 among-study variance explained = 53%). Studies that drew
on records of previous diagnostic assessments resulted in
lower prevalence estimates than those which included a
0.5 1 2.5 5 10 25 50 100 prospective diagnostic assessment (OR = 0.57, 95% CI 0.33 to
per 10 000 (log scale) 0.96; variance explained = 53%). Including region of study
provided the model that explained the most among-study
Figure 1 Forest plot of prevalence estimates and 95% confidence variance (variance explained = 61%) (table 3). In this final
intervals from studies of typical autism, log transformed (n = 37). model, using ICD-10 or DSM-IV led to prevalence estimates
three times those using other diagnostic criteria. The odds
information on study methodology was included in the ratio for age was 0.91 (95% CI 0.83 to 0.99), showing that an
English abstract of a Swedish paper.35 increase of one year in the age of the children screened led to
a significant reduction in prevalence estimates. For example,
Studies of typical autism when the odds ratio is taken to approximate a relative risk, if
The associations between study covariates and prevalence prevalence was estimated to be 10 per 10 000 in a sample of 5
estimates of typical autism from univariate meta-regression year olds, it would be expected to be around 9.1 per 10 000 in
analyses are shown in table 2. Taking account of the age of a sample of 6 year olds. Studies in Japan gave rise to
the children, for example, explained 23% of the among- prevalence estimates that were 3.6 times those in North
studies variance. America.
Diagnostic criteria and decade of publication were the
covariates that explained the most variance among studies in Studies of all ASD
the univariate analyses. These two covariates are collinear The associations between study covariates and prevalence
and it was not possible to include both in a multivariate estimates of all ASD from univariate meta-regression
model. The diagnostic criteria used were entered first into the analyses are shown in table 4. Only three covariates were
multivariate model since this was considered to be more significantly associated with the prevalence estimates: age of
directly related to variation in prevalence estimates than the children screened, urban or rural study location, and the
decade of publication, which is a proxy for all time varying diagnostic criteria used. The screen method used was of
covariates. The binary categorisation of diagnostic criteria borderline significance. Of these, diagnostic criteria explained
was used, as it was not possible to use multiple categories of most among-study variance, and was therefore included in
diagnostic criteria in a multivariate analysis with so few the multivariate analyses. Each of the other covariates was
studies. Age of the children screened also explained much introduced into the model in turn to form models with two
among-study variance, and was entered next into the model. covariates. As in the analyses of studies of typical autism, as
Models with three covariates were constructed which decade and diagnostic criteria were collinear, only the
included age, diagnostic criteria, and each remaining covariate for diagnostic criteria was included in further
covariate in turn. Screening method used, and whether the analyses. When adjusting for diagnostic criteria, the only

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12 Williams, Higgins, Brayne

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Table 2 Results of meta-regression of studies of typical autism, univariate analyses (n = 35)
Categories of covariate Variance
Covariate (first listed used as baseline) No. studies Odds ratio 95% CI (odds ratio) p value t2 explained (%)

No covariates 35 – – – 0.98 –
Age Mid-point of age range 35 0.84 0.75 to 0.93 0.002 0.75 23
(continuous variable)
Decade 1960s and 1970s 3 1.00 – – 0.58 41
1980s 14 1.80 0.68 to 4.81 0.24
1990s 9 4.26 1.52 to 11.94 0.006
2000s 9 6.42 2.29 to 17.99 ,0.001
Region* N. America 6 1.00 – – 0.85 13
Japan 7 3.19 1.14 to 8.94 0.03
Europe and Scandinavia 22 2.05 0.87 to 4.85 0.10
Area Rural/mixed 24 1.00 – – 0.86 12
Urban 11 2.10 1.07 to 4.14 0.03
Sample screened Population based 21 1.00 – – 0.88 10
Clinic based 14 0.54 0.28 to 1.03 0.06
Screen method Routine checks 6 1.00 – – 0.77 21
Letter for referrals 13 0.28 0.12 to 0.68 0.005
Questionnaires 3 0.45 0.13 to 1.62 0.22
Records 13 0.53 0.22 to 1.27 0.16
Assessment Prospective 23 1.00 – – 0.95 3
Retrospective 12 0.73 0.37 to 1.46 0.38
Diagnostic criterion 1 Not ICD-10 or DSM-IV 21 1.00 – – 0.64 35
ICD-10 or DSM-IV 14 3.32 1.89 to 5.81 ,0.001
Diagnostic criterion 2 Kanner 5 1.00 – – 0.54 45
Rutter 4 1.38 0.51 to 3.71 0.53
DSM-III 8 1.95 0.84 to 4.57 0.12
DSM-III-R 3 3.29 1.13 to 9.58 0.03
ICD-9 1 1.82 0.37 to 8.85 0.46
ICD-10 11 5.10 2.29 to 11.47 ,0.001
DSM-IV 3 7.17 2.46 to 20.91 ,0.001

*Region = North America: USA and Canada; Japan; Europe (UK, France, Germany, Ireland) and Scandinavia (Denmark, Sweden, Norway, Finland, Iceland).
Sample screened = whole population versus clinic based (general clinical services and clinic specialist services).

Table 3 Multivariate meta-regression results, for studies of typical autism (n = 35)*

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Covariate Odds ratio 95% CI (odds ratio) p value

Diagnostic criteria Not ICD-10 or DSM-IV 1.00 – –


ICD-10 or DSM-IV 3.36 2.07 to 5.46 ,0.001
Age (years) 0.91 0.83 to 0.99 0.03
Region North America 1.00 – –
Japan 3.60 1.73 to 7.46 0.001
Europe and Scandinavia 1.67 0.92 to 3.02 0.09
Intercept 5.1561024 2.0661024 to 1.2961023 ,0.001

*As an example, to estimate the prevalence of typical autism in 8 year old European children using ICD-10, take
10 0006(x/(1+x)), where x = 5.156102463.3660.91861.67, that is, a prevalence of 13.6 per 10 000.

covariates that were significantly associated with the and 20.0 per 10 000 for all ASD are slightly lower than those
prevalence estimates were the age of the children screened estimated previously at 8.7–10.0 per 10 000 and 27.5 per
(variance explained = 50%) and urban or rural study location 10 000 respectively.1 3
(variance explained = 53%). Both these models are presented The covariate most strongly associated with prevalence
(table 5). Using ICD-10 or DSM-IV gave rise to prevalence estimates for typical autism and all ASD was the diagnostic
estimates that were over twice those in studies using other criteria used. This association has been recognised pre-
diagnostic criteria. When including age in the model, an viously.2–4 The time variation in prevalence is so closely
increase in the age of the sample by one year was associated linked to changes in diagnostic criteria, the two could not be
with a fall in prevalence by a factor of approximately 0.85, examined separately. Furthermore, it was not possible to
taking the odds ratio as an approximation of a relative risk. account entirely for the effect of the diagnostic criteria on the
Alternatively, when including study location, studies in prevalence estimates as the ICD-10 and DSM-IV diagnostic
urban areas gave rise to prevalence estimates over 2.5 times schema leave some scope for variation in their interpretation
those in rural or mixed urban and rural areas. and application.
The age of the children screened was strongly associated
DISCUSSION with the prevalence estimates. Manifestations of ASD may be
Main findings more obvious in younger children. Alternatively, some
As expected, a large amount of variation in prevalence across screening methods may be more sensitive for younger
studies was found by graphical representation of estimates children. Methods of screening were found to be significantly
and by indices of heterogeneity. Despite this wide variation, associated with the prevalence estimates in the univariate
pooled estimates are useful to indicate the public health analyses of typical autism, but not after adjusting for the age
burden of the disorder. The study variation is reflected in the of the children screened.
very large intervals on the summaries of overall prevalence. The multivariate model that explained most among-study
The estimates of around 7.1 per 10 000 for typical autism, variance in studies of typical autism included the region

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Prevalence studies of autism spectrum disorders 13

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Table 4 Results of meta-regression of studies of all autism spectrum disorders, univariate analyses (n = 23)
Categories of covariate Variance
Covariate* (first listed used as baseline) No. studies Odds ratio 95% CI (odds ratio) p value t2 explained (%)

No covariates 23 1.01
Age Mid-point of age range 23 0.82 0.72 to 0.94 0.005 0.74 27
(continuous variable)
Decade 1960s and 1970s 1 1.00 – – 0.43 57
1980s 6 0.29 0.07 to 1.19 0.09
1990s 5 0.93 0.22 to 3.94 0.92
2000s 11 1.75 0.44 to 6.89 0.42
Region N. America 4 1.00 – – 0.77 24
Japan 0 – – – – –
Europe 10 1.99 0.70 to 5.58 0.19
Scandinavia 9 0.72 0.25 to 2.05 0.54
Area Rural/mixed 17 1.00 – – 0.86 15
Urban 6 2.44 1.02 to 5.81 0.05
Sample screened Population based 14 1.00 – – 0.97 4
Clinic based 9 0.66 0.29 to 1.54 0.34
Screen method Routine checks 3 1.00 – – 0.72 29
Letter for referrals 9 0.31 0.10 to 0.98 0.05
Questionnaires 3 0.76 0.19 to 3.03 0.69
Records 8 0.93 0.30 to 2.97 0.91
Assessment Prospective 14 1.00 – – 0.96 5
Retrospective 9 1.52 0.66 to 3.49 0.32
Diagnostic criterion 1 Not ICD-10 or DSM-IV 9 1.00 – – 0.69 32
ICD-10 or DSM-IV 14 3.08 1.52 to 6.25 0.002

*Too few studies relative to the number of categories in diagnostic criterion 2 (criteria separately) were available to include this covariate in the analysis.

Table 5 Two multivariate meta-regression models for studies of all autism spectrum
disorders (n = 23)
Covariate Odds ratio 95% CI (odds ratio) p value

Model 1—including age


Diagnostic criteria Not ICD-10 or DSM-IV 1.00 – –

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ICD-10 or DSM-IV 2.61 1.40 to 4.85 0.003
Age (years) 0.85 0.85 0.76 to 0.96 0.006
Intercept 1.4561023 1.4561023 3.2561024 to 6.4561023 ,0.001

Model 2—including study area


Diagnostic criteria Not ICD-10 or DSM-IV 1.00 – –
ICD-10 or DSM-IV 3.48 1.92 to 6.33 ,0.001
Area Rural/mixed 1.00 – –
Urban 2.85 1.47 to 5.53 0.002
Intercept 2.0361024 7.1561025 to 5.7361024 ,0.001

studied, with studies from Japan having significantly higher method relied on records, these may have been more
estimates than North American studies. This could be due to complete in urban locations. If the screen method used
other study factors. For example, a higher proportion of the referrals from clinicians, it is possible that a higher
Japanese studies were from urban areas (4/7 (57%) studies) proportion of children were known to services in urban
compared to those in North America (1/6 (17%) studies). All locations. There may have been different diagnostic practices
the Japanese studies used prospective diagnostic assess- in urban locations where staff were more likely to be
ments, and all but one drew on whole population rather than employed at specialist healthcare centres than in rural
clinical samples. Due to the imposed limit of three covariates locations. It is easier to access the population in urban
in the model, it was not possible to adjust for further locations, and response rates may have been higher, but data
potential effect modifiers. Countries differ in their diagnostic on response were too limited to investigate this.
practice both in their theoretical background and their
training procedures for healthcare workers. This may, in Limitations and recommendations for future research
part, account for between-region variation in prevalence. Publication bias was not investigated in this review, as funnel
In an alternative model for typical autism, when adjusting plots were not considered appropriate due to the large degree
for age and diagnostic criteria, studies including prospective of variation across studies. It is unlikely that the set of papers
diagnostic assessments gave rise to higher prevalence published is biased with respect to prevalence reported.
estimates than those using retrospective records. This may However, it is possible that some studies were not identified
be linked to the use of different diagnostic methodology at in the searches if they were not published in mainstream
different times. Alternatively, an assessor taking part in journals. There may have been some time lag bias, with
prospective research studies might observe children more smaller studies, or studies with unremarkable results, coming
closely for symptoms of ASD. through to publication slower than larger studies.
When adjusting for diagnostic criteria, urban location was Of the papers identified for detailed examination, five
also observed to be associated with higher prevalence potentially eligible studies were excluded as they did not have
estimates for both typical autism and all ASD. If the screen a detailed English summary or were not peer reviewed. There

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14 Williams, Higgins, Brayne

Arch Dis Child: first published as 10.1136/adc.2004.062083 on 29 April 2005. Downloaded from http://adc.bmj.com/ on October 10, 2021 at UK NHS and HE Athens Access. Protected by
is no reason to suspect that the lack of availability of data 6 Gillberg C, Wing L. Autism: not an extremely rare disorder. Acta Psychiatr
Scand 1999;99:399–406.
from these studies is a direct consequence of the prevalences 7 Wing L. The definition and prevalence of autism: a review. European Child
they might have observed. and Adolescent Psychiatry 1993;2:61–74.
The choice of coding of the covariates may have affected 8 Lewis S, Clarke M. Forest plots: trying to see the wood and the trees. BMJ
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funding from the Shirley Foundation. We wish to thank Prof Patrick
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Bolton and Prof Simon Baron-Cohen for their comments on an ten years ago? Br J Psychiatry 1991;158:403–9.
earlier draft of this paper. 33 Ohtaki E, Kawano Y, Urabe F, et al. The prevalence of Rett syndrome and
infantile autism in Chikugo District, the southwestern area of Fukuoka
..................... prefecture, Japan [letter]. J Autism Dev Disord 1992;22:452–4.
34 Fombonne E, du Mazaubrun C. Prevalence of infantile autism in four French
Authors’ affiliations regions. Soc Psychiatry Psychiatr Epidemiol 1992;27:203–10.
J G Williams, C E G Brayne, Department of Public Health and Primary 35 Herder GA. [Infantile autism among children in the county of Nordland.
Care, University of Cambridge, UK Prevalence and etiology]. Tidsskr Nor Laegeforen 1993;113:2247–9.
J P T Higgins, MRC Biostatistics Unit, Cambridge, UK and Public Health 36 Honda H, Shimizu Y, Misumi K, et al. Cumulative incidence and prevalence of
Genetics Unit, University of Cambridge, UK childhood autism in children in Japan. Br J Psychiatry 1996;169:228–35.
37 Arvidsson T, Danielsson B, Forsberg P, et al. Autism in 3-6-year-old children
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38 Webb EV, Lobo S, Hervas A, et al. The changing prevalence of autistic
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http://ceedar.education.ufl.edu/tools/innovation-configurations/

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SYSTEMATIC REVIEW : INTERVENSI TERAPI MUSIK TERHADAP


KEMAMPUAN INTERAKSI SOSIAL PADA ANAK AUTISME
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Fitria Afdhal(1*), Eva Chundrayetti(2), Deswita Deswita(3) Peer Review Process
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Interaksi sosial adalah hubungan manusia dengan manusia lainnya atau Password
hubungan manusia dengan kelompok atau hubungan kelompok dengan Remember me

kelompok. Tujuan penelitian ini adalah untuk menganalisis pengaruh Login

intervensi terapi musik terhadap kemampuan interaksi sosial pada anak Notifications
autisme. Metode penelitian berupa systematic review ini dimulai dari
» View
pencarian data menggunakan 5 database yaitu Science Direct, PuBmed, » Subscribe

SAGE, Taylor & Francis Online (Tandfonline), dan Google Scholar dengan
Journal Content
rentang tahun 2013-2020 dengan jumlah 1.031 artikel. Ditemukan 9 artikel
yang memenuhi kriteria yang dinilai menggunakan the JBI critical appraisal Search

tools. Hasil telaah artikel yang telah dilakukan adalah terapi musik diberikan
Search Scope
dengan berbagai metode seperti improvisasi, mendengarkan musik, dan
All
menyanyi. Jenis musik yang diberikan adalah murrotal Al-Qur’an, musik Search
klasik, dan musik instrumental. Kesimpulan dari telaah artikel ini adalah
Browse
metode yang bisa diberikan adalah metode improvisasi dengan durasi waktu
» By Issue
minimal 30 menit dan durasi waktu maksimal adalah 60 menit. Jenis musik » By Author
» By Title
yang bisa diberikan adalah murrotal Al-Qur’an dan musik klasik. Rekomendasi » Other Journals
dalam penelitian adalah melakukan intervensi terapi musik dengan metode
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improvisasi, jenis musik murrotal Al-Qur’an dan musik klasik.

KEYWORDS

anak autisme; terapi musik; interaksi sosial

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Review

Prediction in Autism Spectrum


Disorder: A Systematic Review of
Empirical Evidence
Jonathan Cannon et al. Autism Res. 2021 Apr.

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Full text links Cite …

Abstract
According to a recent influential proposal, several
phenotypic features of autism spectrum disorder
(ASD) may be accounted for by differences in
predictive skills between individuals with ASD and
neurotypical individuals. In this systematic review,
we describe results from 47 studies that have
empirically tested this hypothesis. We assess the
results based on two observable aspects of
prediction: learning a pairing between an
antecedent and a consequence and responding to
an antecedent in a predictive manner. Taken
together, these studies suggest distinct differences
in both predictive learning and predictive response.
Studies documenting differences in learning
predictive pairings indicate challenges in detecting
such relationships especially when predictive
features of an antecedent have low salience or
consistency, and studies showing differences in
habituation and perceptual adaptation suggest
low-level predictive processing differences in ASD.
These challenges may account for the observed
differences in the influence of predictive priors, in
spontaneous predictive movement or gaze, and in
social prediction. An important goal for future
research will be to better define and constrain the
broad domain-general hypothesis by testing
multiple types of prediction within the same
individuals. Additional promising avenues include
studying prediction within naturalistic contexts and
assessing the effect of prediction-based
intervention on supporting functional outcomes for
individuals with ASD. LAY SUMMARY: Researchers
have suggested that many features of autism
spectrum disorder (ASD) may be explained by
differences in the prediction skills of people with
ASD. We review results from 47 studies. These
studies suggest that ASD may be associated with
differences in the learning of predictive pairings
(e.g., learning cause and effect) and in low-level
predictive processing in the brain (e.g., processing
repeated sounds). These findings lay the
groundwork for research that can improve our
understanding of ASD and inform interventions.
Autism Res 2021, 14: 604-630. © 2021
International Society for Autism Research and Wiley
Periodicals LLC.

Keywords: autism spectrum disorder; brain;


learning; perception; prediction.

© 2021 International Society for Autism Research, Wiley


Periodicals LLC.

Conflict of interest statement


The authors have no conflicts of interest to
disclose.

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Revista Paulista de Pediatria
Sociedade De Pediatria De Sao Paulo

Language: English | Portuguese

AUTISM SPECTRUM DISORDER:


A SYSTEMATIC REVIEW ABOUT
NUTRITIONAL INTERVENTIONS

TRANSTORNO DO ESPECTRO
AUTISTA: UMA REVISÃO
SISTEMÁTICA SOBRE
INTERVENÇÕES NUTRICIONAIS
Manuela Albernaz Monteiro, Andressa Assumpção Abreu
dos Santos, [...], and Rosane Valéria Viana Fonseca Rito

Additional article information

ABSTRACT
Objective:

To identify and analyze the scientific evidence of nutritional


interventions performed in children and adolescents with
Autism Spectrum Disorder.

Data sources:

A systematic review was conducted in the MEDLINE,


Cochrane Library, Embase, LILACS, Google Scholar,
PubMed, PsycINFO and Periódicos CAPES databases, using
a search strategy to identify studies published between
January 2003 and March 2018, in Portuguese, English and
Spanish. Were included studies that described nutritional
interventions in children and adolescents with autism
spectrum disorders and assessed autistic behavior and/or
gastrointestinal symptoms. We excluded other review articles
and studies that did not include a control group in the
research design. The studies were reviewed for descriptive
information, and the quality of evidence was assessed through
the GRADE system.

Data synthesis:

18 studies were included in the review, being 16 randomized


clinical trials, 1 case-control study and 1 open-label trial. As a
result, the implementation of a gluten-free and casein-free
diet was the most used intervention among the studies. Of the
total, 10 studies showed a positive association of intervention
with the evaluated results, while 8 did not find of a significant
association.

Conclusions:

Although some authors report progress in the symptoms


associated with autism in individuals with Autistic Spectrum
Disorder undergoing nutritional interventions, there is little
scientific evidence to support the use of nutritional
supplements or dietary therapies in children and adolescents
with autism.

Keywords: Autistic disorder, Autism, Diet therapy, Child,


Adolescent, Review

RESUMO

Objetivo:
Identificar e analisar as evidências científicas de intervenções
nutricionais realizadas em crianças e adolescentes com
Transtorno do Espectro Autista.

Fontes de dados:
Realizou-se uma revisão sistemática nas bases de dados
MEDLINE, Cochrane Library, Embase, LILACS, Google
Acadêmico, PubMed, PsycINFO e Periódicos CAPES
utilizando estratégia de busca abrangente para identificar
estudos publicados entre janeiro de 2003 e março de 2018,
em língua portuguesa, inglesa e espanhola. Foram incluídos
estudos que descreveram intervenções nutricionais em
crianças e adolescentes com Transtorno do Espectro Autista e
avaliaram sintomas comportamentais e/ou sintomas
gastrintestinais, sendo excluídos artigos de revisão e estudos
que não incluíram um grupo controle em seu delineamento.
Os estudos foram examinados para obter informações
descritivas, e a qualidade de evidência foi avaliada por meio
do Sistema GRADE (Grading of Recommendations
Assessment, Development and Evaluation).

Síntese dos dados:


Dezoito estudos foram incluídos na revisão (16 ensaios
clínicos randomizados, um estudo de caso-controle e um
ensaio clínico aberto). As intervenções e os resultados
variaram, entretanto a implementação de uma dieta livre de
glúten e caseína foi a intervenção mais utilizada entre os
estudos. Do total, dez estudos encontraram associação
positiva entre intervenção e resultados avaliados, enquanto
oito não encontraram associação significativa.

Conclusões:
Embora alguns autores exponham progressos nos sintomas
associados ao autismo em indivíduos com esse transtorno
submetidos a intervenções nutricionais, há poucas evidências
científicas para apoiar o uso destas em crianças e
adolescentes com autismo.

Palavras-chave: Transtorno do Espectro Autista, Autismo,


Dietoterapia, Criança, Adolescente, Revisão

INTRODUCTION
Autism Spectrum Disorder (ASD) is a neurodevelopmental
disorder that encompasses Autism, Rett Syndrome,
Asperger’s Syndrome, childhood disintegrative disorder, and
global developmental disorder without further specification.
Currently, 1% of the world’s population is diagnosed with
ASD. 1 In the United States, the prevalence of this disorder is
one in 68 eight-year-olds. 2

The following are established as characteristics of autism:


deficits in communication and social interaction; difficulty in
establishing normal conversations, whether they involve
verbal or nonverbal aspects and demonstrated social interest,
emotion and affection; difficulty in establishing relationships,
interests and activities; insistence on doing the same things;
stereotyped movements; inflexible adherence to a routine
(which includes, in the nutritional field, food neophobia); and
hyper or hiporeaction to sensory stimuli, including food
selectivity. Currently, diagnoses are made using the
Diagnostic and Statistical Manual of Mental Disorders
(DSM-V), updated in 2013, since there are still no specific
laboratory tests that can identify the disease. 1 , 3

Little is known about the etiology and pathogenesis of ASD.


Evidence suggests the involvement of diverse genetic defects
in conjunction with environmental and biological factors. 4 ,
5 In an attempt to explain the pathophysiology involved in
autism and help with making diagnoses, several studies have
investigated changes in physiology and different biomarkers
in subjects with ASD. Through these studies, it was observed
that individuals with ASD had several biological changes,
such as a greater circulation of inflammatory cytokines,
modifications and nonspecific intestinal inflammation, in
addition to high concentrations of amino acids and peptides
from food in the blood, cerebrospinal fluid and urine, leading
to a theory about the connection between autism and
problems in metabolizing substances from food. 3

Abnormalities in metabolic responses are described in studies


such as the opioid excess theory first proposed by Panksepp
in 1979. Such anomalies are due to the high intestinal
permeability that allows harmful compounds to pass through,
causing intestinal inflammation, and overrunning the blood-
brain barrier, leading to changes in brain metabolism. In
addition, due to the characteristic selective eating behavior of
individuals with autism and how they reject certain foods,
their food intake may be limited, making their intake of
vitamins, minerals and essential fatty acids inadequate. This
requires supplementation interventions aimed not only at
improving nutritional status, but also at behavioral changes
generated by nutrient deficiency. 9 , 10

To date, the main treatment for ASD patients is based on


pharmacotherapy, but it is still a limited resource that needs
further study. In addition, the number of complementary and
alternative therapies for the treatment of this disorder is
increasing, and nutritional interventions are very frequent.
Their goal is to minimize the deleterious effects caused by the
improper metabolism of food substances. 11 , 12

This review aimed to analyze scientific evidence available in


the literature and related to nutritional interventions
performed in children and adolescents with ASD, in order to
understand and describe the characteristics of these studies.
Additionally, it aimed to evaluate the results and the
relevance of existing research on the topic.

METHOD
The study was conducted through a research strategy that
considered the terms that characterize the research question
structured by the Population, Intervention, Comparison and
Outcome (PICO) method (Table 1). The databases used were
MEDLINE, the Cochrane Library, Embase and LILACS, in
addition to the Google Scholar, PubMed, PsycINFO and
CAPES Periodical aggregating systems. A manual search was
also performed by checking the list of “Bibliographical
References” of the studies included in the review. To increase
search sensitivity and ensure satisfactory search retrieval, we
used, in addition to controlled vocabulary (descriptors), text
words, synonyms, keywords and spelling variations, which
were combined using Boolean operators. The following
search terms and sequences were used: “autistic disorder” OR
“autism spectrum disorder” OR “Asperger syndrome” OR
“autism” OR “disorder, autistic” OR “Asperger disease” OR
“Asperger disorder” AND “nutrition therapy” OR “medical
nutrition therapy” OR “nutritional status” OR “nutrition” OR
“diet modifications” OR “diet therapies” OR “diet, gluten-
free” OR “gluten-free diet, and their respective translations
into Portuguese and Spanish.

Table 1
Table 1
Acronym for the population, intervention, comparison
and outcome method.

To be included in the systematic review, studies had to meet


the following criteria:

Include at least one person aged zero to 19 years old,


diagnosed with ASD, including autism, Asperger’s
Syndrome or invasive developmental disorder, not
otherwise specified.

The intervention implemented had to include diet


changes of the research participants.

The dependent variable needed to be somehow


associated with behavioral symptoms of ASD and/or
gastrointestinal symptoms.

Comparative studies that included a control group.

Original research studies that provided sufficient detail


about methods and results, allowing for the
identification and aggregation of data and results.

Studies published in English, Spanish and Portuguese


between January 2003 and March 2018.

Studies that were excluded were:

Ones that evaluated children and adolescents with


different developmental disorders, including ASD, and
other conditions, but without separate reporting of the
results.

Ones that evaluated only surrogate outcomes (eg.,


plasma levels of inflammatory markers, urinary peptide
excretion) or specific outcomes that are unrelated to
autism symptoms and gastrointestinal symptoms.

The procedures were implemented without the


supervision or direction of researchers.

The articles found were submitted to the Mendeley website, a


bibliographic reference manager, and duplicates were
removed. Initially, two authors evaluated the title and abstract
of the articles to determine whether they met the inclusion
and exclusion criteria. The studies selected from this first
analysis were independently examined by two reviewers, who
read the full text.

For the articles included in the review, a clinical data


extraction form was used to synthesize the following
information: study design, characteristics of the population
studied, description of the intervention, as well as its
duration, outcome measures, evaluation tools, and qualitative
and quantitative data.

The quality of evidence represents the confidence in


estimating the effects presented by the studies. We used the
Grading of Recommendations Assessment, Development and
Evaluation (GRADE) system as an assessment tool. As such,
the studies were classified into four levels: high, moderate,
low and very low (A, B, C and D, respectively). 13

The study design defined the initial classification of evidence


quality, whereby evidence from randomized clinical trials
started with high levels of evidence, and evidence from
observational studies started with low levels of evidence.
From the initial classification, aspects that could reduce or
increase the level of evidence were examined. The factors
responsible for the reduction in the level of evidence were:
methodological limitations, inconsistency, indirect evidence,
inaccuracy and publication bias. And the criteria that could
raise the evidence from observational studies were: large
magnitude of effect, dose-response gradient, and residual
confounders. 13 , 14

RESULTS
From the initial searches, 876 articles were selected, 848 from
searches in aggregators and databases and 28 from searches
from other sources. The duplicates were discarded (n = 161)
and the reviewers selected articles by reading the titles and
abstracts, resulting in the exclusion of 676 articles that,
despite fitting the search strategy, did not address the theme
studied. After the exclusion of the articles, 39 texts were read
in full, and the inclusion and exclusion criteria were applied,
resulting in the analysis of 18 articles for the present study
(Figure 1). Of the 18 articles included, 16 were randomized
controlled trials (RCT), 9 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 ,
23 , 24 , 25 , 26 , 27 , 28 , 29 and only five of them did not use
the double-blind model. 19 , 21 , 24 , 25 , 29 The total number
of participants in the interventions was 639, the smallest
analyzed was of 12 children 26 and the largest was of 76. 21
Participants’ ages ranged from two to 18 years old.
Intervention time ranged from seven days to 24 months,
showing a very diverse duration between interventions.
Regarding the location of each study, it was observed that
most were conducted in the United States (n = 9),
representing 50% of the total. Four studies were conducted in
Europe and the other five studies were conducted in Asia.
Regarding quality, the articles were evaluated according to
the GRADE System: six articles were classified in category
A, 16 , 18 , 19 , 28 , 29 , 30 showing low risk of bias and
highly reliable evidence; ten articles were in category B, 9 ,
17 , 20 , 22 , 23 , 24 , 25 , 26 , 27 , 31 with moderate risk of
bias and reliable evidence; and two articles were in category
C, 16 , 21 indicating a high risk of bias and poor quality of
evidence.

Figure 1
Figure 1
Flowchart of studies selected for review.

Regarding the interventions evaluated, the following were


analyzed: a gluten and casein free diet; omega 3 supplements;
micronutrient supplements; and alternative diets.

We found nine articles that performed nutritional


interventions related to gluten and/or casein in the diet. 20 ,
21 , 23 , 24 , 25 , 26 , 27 , 29 , 31 The Gluten Free Casein Free
(GFCF) intervention was the most frequent among the studies
analyzed. However, most of these studies have not shown
statistical improvement regarding the clinical symptoms of
autism. Some studies have shown improved communication,
stereotyped movements, aggressiveness, and signs of
Attention Deficit Hyperactivity Disorder, but with no
statistical changes. 21 , 24 , 25 Of these articles, one
presented a different proposal, in which gluten and casein
supplementation was added to the diet of children with ASD
in order to evaluate maladaptive behavior. However, the
results did not detect a significant change for the variable
analyzed by the study. 27 Despite having moderate evidence
quality (B) and having been conducted with a restricted age
group (four to seven years old), the intervention time (seven
days) can be considered a bias in this sample, as pointed out
by Hyman et al., in 2016, who observed improvement in
symptoms after six months of this type of nutritional
intervention. 23 El-Rashidy et al. analyzed autistic behavior
with the use of specific diets for six months. The patients who
participated in the research were divided into three groups:
the first group participated in the Atkins diet; the second, in
the GFCF diet; and the third, in the normal, unrestricted diet.
The first and second groups showed a significant reduction in
autism scores. Scales or scores are used to assess childhood
autism, with 30 being the cutoff value for ASD. A score of
<30 is considered to be non-autistic; between 30 and 37 is
classified as mild to moderate ASD; and between 37.5 and
60, is severe ASD. Therefore, there was a marked
improvement in symptoms in the first group (Atkins diet)
compared to the second group (GFCF diet). 31 The authors
pointed out that individuals under GFCF dietary intervention
showed significant improvements in various aspects of
development and autistic behavior, but did not specify the
method used to control intake. With regard to gastrointestinal
symptoms, only one study pointed to significant
improvement, as the researchers themselves provided the
food, in order to ensure that gluten was actually excluded
from the diet. 21 Although this study reported significant
improvement in gastrointestinal symptoms, it is worth noting
that the duration of this intervention was only six weeks, the
age of the sample was very wide (4 to 16 years) and the
quality of evidence was considered low (C).

Of the studies included in this review 16 , 17 , 18 , 28 that


used omega 3 supplementation as an intervention to improve
the clinical condition of children and adolescents with ASD,
no changes were observed in the patients. It is worth noting
that the studies did not agree on the intervention time, since
only one of them administered supplements for a longer
period of time (six months). 28 Another relevant aspect was
the lack of consensus regarding the dosage of omega 3
supplements offered to patients. Furthermore, these studies
included small samples and lacked homogeneous populations,
aspects also highlighted by another review. 34

Three articles were identified 9 , 22 , 30 that performed


interventions related to micronutrient supplementation in
order to improve the clinical picture of ASD. One study gave
vitamin B6 and C oral supplements to the intervention group
for three months. However, the authors reported general
improvement in gastrointestinal symptoms in both the
placebo and control groups. 9 Another study looked at
intramuscular methylcobalamin supplementation for eight
weeks and found significant improvement in typical autism
symptoms in the supplemented group compared with a
placebo. It is worth noting that this improvement was verified
in only one of the tests performed. 22 In another survey,
vitamin A oral supplements were administered for six
months, with significant progress being noted in several
clinical symptoms in the patients undergoing the intervention,
30 once again reinforcing the need for a longer intervention
time, one that is greater than six months.

Alternative diets were analyzed by two authors. Chan et al.


19 , in 2012, proposed a differentiated oriental diet,
subjecting the intervention group to a reduction in the
consumption of “hot” spices, condiments, meat and other
specific foods, with significant improvement in several
behavioral symptoms typical of ASD. 19 In 2013, 15 Al-
Ayadhi et al. implemented an intervention in which cow’s
milk was replaced by camel’s milk, and they reported
significant improvement in communication and cognition in
the two groups supplemented with camel milk, to the
detriment of the cow’s milk group. 15 It is worth noting that
the different diets used foods typical of the region in question,
which is a limiting factor both with regard to cost and dietary
habits, when considering replicating this type of behavior in
other countries, such as Brazil.

DISCUSSION
The present review identified the most frequently
implemented nutritional interventions in the treatment of
children and adolescents with ASD and evaluated the quality
and effectiveness of these interventions, as well as the
possible limitations present in the current literature on the
subject.

The use of alternative treatments for the improvement of


ASD symptoms is widespread, but little evidence supports its
efficacy and safety. Information from the literature in this
field is very limited both in quantity and quality. Although
most of the studies reported in this review found positive
associations between nutritional interventions and autism
symptoms, several limitations identified in the design of the
research make this evidence insufficient.

A more critical analysis of each study would allow for the


identification of several limitations, such as reduced sample
size, the presence of heterogeneous groups, which varied in
gender, age and degree of autism, as well as interventions
with variable and usually short duration, not to mention the
lack of pre- and post- intragroup comparisons. The use of
several different methods to assess outcomes led to a lack of
standardization of the studies, which also made it difficult to
validate the effectiveness of the approaches.

Another issue to be addressed is the risk of confusion bias


present in some articles, in which the assessments of
behavioral variables and the effects of interventions were
established through reports of parents, caregivers and/or
teachers, which may have been distorted over time and
influenced by the fact that the individuals were included in
open clinical trials. Performing treatments at the same time as
the clinical trial may have interfered with the results, but few
studies have evaluated the efficacy/influence of these
therapies. Moreover, the placebo effect may have had an
impact on the results, as seen by Bent et al. 18 In this study,
the placebo group, after six weeks of study, showed
improvements in hyperactivity, as assessed by the Autism
behavior checklist. 18 In 2004 Adams et al. also found
progress in behavioral and gastrointestinal symptoms in the
placebo group. 9

It is worth noting that there was a lack of consensus regarding


the supplement doses to be administered to the patients with
ASD. Furthermore, it was not possible to establish which
dosage caused symptoms to improve or at the time when the
supplement should be administered in order to obtain
favorable results.

These findings are in line with current reviews on the topic.


32 In 2017, Sathe et al. systematically reviewed the
effectiveness of different nutritional interventions in
individuals with Autistic Spectrum Disorders and found
similar results. 32 Another systematic review investigated the
effects of gluten and/or casein free diets on the treatment of
autism and identified a scarcity of quality methodological
evidence to support the use of this treatment in ASD. 33

Despite the outcomes found in this study, the interventions


described here are widely used in children and adolescents
with ASD, by their family members - most without receiving
the opinion of a clinician. Family members, caregivers and
peers report visible improvement in several aspects related to
the clinical and behavioral symptoms of the disorder, as well
as less severe side effects compared to those triggered by
drug therapy. 34

This research did not include unpublished papers and only


comparative studies containing a control group were included
in the review, which may have restricted and negatively
affected the number of references analyzed.

In summary, although some authors report progress in


symptoms associated with autism in individuals with ASD
undergoing nutritional interventions, there is insufficient
scientific evidence to support its use. Therefore, studies with
rigorous methodologies covering the following aspects
should be developed: an intervention period of more than six
months, an adequate sample size, and a well-considered set of
evaluation measures and results. The aforementioned aspects
will allow for a proper understanding of the consistency and
precision of the impact of the intervention on these disorders,
which have become an important public health issue.

Funding
The study did not receive funding.

Article information
Rev Paul Pediatr. 2020; 38: e2018262.
Published online 2020 Mar 16. doi: 10.1590/1984-
0462/2020/38/2018262
PMCID: PMC7077797
PMID: 32187297
Manuela Albernaz Monteiro, a Andressa Assumpção Abreu
dos Santos, a Lidiane Martins Mendes Gomes, a ,* and Rosane
Valéria Viana Fonseca Rito a
aUniversidade Federal Fluminense, Niterói, RJ, Brazil.
*Corresponding author. E-mail:

moc.liamtoh@7sednemenaidil (L.M.M. Gomes).


The authors declare no conflict of interests.
Received 2018 Sep 25; Accepted 2019 Jan 13.
Copyright notice
This is an open-access article distributed under the terms of
the Creative Commons Attribution License
This article has been cited by other articles in PMC.
Articles from Revista Paulista de Pediatria are provided here
courtesy of Sociedade De Pediatria De Sao Paulo

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8

Arch Dis Child: first published as 10.1136/adc.2004.062083 on 29 April 2005. Downloaded from http://adc.bmj.com/ on October 10, 2021 at UK NHS and HE Athens Access. Protected by
ORIGINAL ARTICLE

Systematic review of prevalence studies of autism


spectrum disorders
J G Williams, J P T Higgins, C E G Brayne
...............................................................................................................................
Arch Dis Child 2006;91:8–15. doi: 10.1136/adc.2004.062083

Aim: To quantitatively examine the influence of study methodology and population characteristics on
prevalence estimates of autism spectrum disorders.
Methods: Electronic databases and bibliographies were searched and identified papers evaluated against
See end of article for inclusion criteria. Two groups of studies estimated the prevalence of typical autism and all autism spectrum
authors’ affiliations disorders (ASD). The extent of variation among studies and overall prevalence were estimated using meta-
.......................
analysis. The influence of methodological factors and population characteristics on estimated prevalence
Correspondence to: was investigated using meta-regression and summarised as odds ratios (OR).
Dr J G Williams, Results: Forty studies met inclusion criteria, of which 37 estimated the prevalence of typical autism, and 23
Department of Public
Health and Primary Care, the prevalence of all ASD. A high degree of heterogeneity among studies was observed. The overall
University of Cambridge, random effects estimate of prevalence across studies of typical autism was 7.1 per 10 000 (95% CI 1.6 to
Forvie Site, Robinson 30.6) and of all ASD was 20.0 per 10 000 (95% CI 4.9 to 82.1). Diagnostic criteria used (ICD-10 or
Way, Cambridge CB2
2SR, UK; j.g.williams.97@ DSM-IV versus other; OR = 3.36, 95% CI 2.07 to 5.46), age of the children screened (OR = 0.91 per year,
cantab.net 95% CI 0.83 to 0.99), and study location (e.g. Japan versus North America; OR = 3.60, 95% CI 1.73 to
7.46) were all significantly associated with prevalence of typical autism. Diagnostic criteria, age of the
Accepted sample, and urban or rural location were associated with estimated prevalence of all ASD.
22 December 2004
Published Online First
Conclusions: Sixty one per cent of the variation in prevalence estimates of typical autism was explained by
29 April 2005 these models. Diagnostic criteria used, age of children screened, and study location may be acting as
....................... proxies for other study characteristics and require further investigation.

copyright.
T
he prevalence of autistic disorder is now considered to be Study selection
around 10 per 10 000, and the prevalence of pervasive Identified papers were examined against criteria for inclusion
developmental disorders, 27.5 per 10 000. These are (box 2). The paper itself was examined if the abstract was
derived from studies which have estimated prevalences of
autistic disorder ranging from 0.7 to 72.6 per 10 000.1 An
increase in prevalence estimates has been observed over time, Box 1: Search strategy for identifying
the reasons for which are not clear and may include: changes prevalence studies
in study methodology; a genuine rise in autism risk factors;
increase in services available, including diagnostic; increased MEDLINE (PubMed) (searched 13/04/04)
awareness among educational and clinical professionals; and Years (1966–2004):
growing acceptance that autism can coexist with a range of (‘‘Autistic-Disorder’’/all subheadings [MeSH] OR
other conditions.1–4 ‘‘Asperger-Syndrome’’/all subheadings [MeSH] OR
True variation in prevalence could generate aetiological ‘‘Schizophrenia-Childhood’’/all subheadings [MeSH] and
hypotheses for autism and it is vital to understand what (PY = 1966–1970) OR autis* (free text term)) AND
underpins the variation. Accurate estimates of the true (‘‘Prevalence-‘‘/all subheadings [MeSH] OR ‘‘Cross-
prevalence are of value in planning diagnostic and interven- Sectional-Studies’’/all subheadings [MeSH] OR ‘‘Mass-
tion services. Screening’’/all subheadings [MeSH] OR ‘‘Multiphasic-
Several narrative reviews have been conducted. This paper Screening’’/all subheadings [MeSH]).
uses systematic and quantitative methods to examine reasons
EMBASE (Excerpta Medica Database) (searched 13/04/04)
for variation in prevalence estimates. The aims are to assess
(BIDS EMBASE, via Ovid, copyright 2003)
the degree of variation among prevalence studies of autism,
Years (1980–2004):
and to provide an overall summary of prevalence diversity
(exp` autism/ OR exp infantile autism/ OR exp Asperger
taking into account among-study variance using meta-
syndrome/ OR autism.mp1 (as keyword) OR Asperger.mp
analysis. Aspects of study methodology and population
(as keyword)) AND (exp prevalence/ OR exp mass screen-
characteristics are then examined using meta-regression to
ing/ OR exp screening/ OR cross-sectional.mp (as key-
investigate their influence on prevalence estimates. word)) NOT (genetic screening/exp OR genetic screen.mp
(as keyword).
METHODS
Literature searches MeSH (Medical Subjects Headings), The National Library of
Two databases, MEDLINE and EMBASE, were systematically Medicine controlled vocabulary for indexing articles in
searched by the first author (box 1). In addition, bibliogra- PubMed; `exp, explode term (search under all subheadings);
phies of previous reviews1 5 6 were examined to identify 1mp, uses the database thesaurus search term.
published prevalence studies.

www.archdischild.com
Prevalence studies of autism spectrum disorders 9

Arch Dis Child: first published as 10.1136/adc.2004.062083 on 29 April 2005. Downloaded from http://adc.bmj.com/ on October 10, 2021 at UK NHS and HE Athens Access. Protected by
insufficiently clear. Where there was more than one paper for the true prevalence was calculated as the mean of
published on a particular study, the most recent was included logits ¡ 1.96 t, where t is the among-study standard
in the review. deviation.11

Data extraction Investigation of sources of heterogeneity


Methods and population characteristics reported across most The potential influence of covariates on the prevalence
studies were selected for data extraction. The first author estimates was investigated using a random effects regression
extracted and coded the data. In studies using different model, thus taking account of among-study variance, using
diagnostic criteria, prevalence data based on the more the metareg command in STATA.12 The regression coefficients
recently published diagnostic criteria were extracted. The represent log odds ratios, which are presented as odds ratios
studies formed two groups: those that assessed the pre- with 95% confidence intervals.
valence of classic autism, or autistic disorder, known here as A multivariate meta-regression model was constructed to
‘‘typical autism’’; and those that assessed the prevalence of investigate which covariates were associated with prevalence
autism spectrum disorders (ASD) or all pervasive develop- estimates if there was adjustment for other study covariates.
mental disorders, known here as ‘‘all ASD’’. Assessments of The fit of each model was assessed using the percentage of
risk of bias included reporting of refusal rates and the among-study variance explained ((12(t2 in model/t2 in
reliability of screen and assessment procedures. model with no covariates))6100), together with a signifi-
cance test for each introduced variable (T = coefficient/SE,
Analysis related to the t-distribution). The models were constructed
In the basic tables, crude prevalence estimates (number of using a forward stepwise procedure as described in the
cases/sample size) were presented, along with standard results section. For each model a maximum number of
errors. For all meta-analyses and meta-regressions, preva- covariates was set at n/10 where n was the number of studies,
following standard recommendations for model size relative
lence estimates were transformed to logits to
to sample size.13
improve their statistical properties. These were later back-
transformed to prevalences and expressed as cases per 10 000
RESULTS
people.
Studies identified
Literature searches identified 670 papers (including dupli-
Description of heterogeneity among studies and cates). After exclusion through comparison of titles and
summary of prevalence abstracts against inclusion criteria, 77 papers were identified
Forest plots8 were used to visualise the extent of hetero- for detailed examination. Thirty seven papers were excluded,
geneity among studies. Two statistical methods were used to including ten on the basis of inclusion criterion 2 (box 2), ten
quantify the variation. A standard test for heterogeneity on the basis of criterion 4, nine on the basis of 6, and one on

copyright.
examined the null hypothesis that the true prevalences are the basis of 7. In addition, four papers did not have detailed
identical in every study. Since heterogeneity was expected a English summaries, one was not peer reviewed, and two were
priori, this was supplemented with a measure of the degree of untraceable. Of these seven potentially eligible studies, four
inconsistency across studies, I2.9 I2 describes the proportion of were conducted in Japan, one in the USA, one in France, and
variation in prevalence estimates that is due to genuine one in Sweden.
variation in prevalences rather than sampling error. It is Forty papers met inclusion criteria, of which 37 gave
expressed as a percentage, with 0% indicating consistency. estimates for typical autism and 23 for all ASD (table 1). The
The random effects model assumes the study prevalences study sample sizes ranged from 826 to 4 590 333 (med-
follow a normal distribution, allowing for among-study ian = 48 705). Only 17 (40%) studies reported the refusal rate
variation.10 The usual confidence interval for the mean in at the screen phase of the study, and 13 (33%) at the
the random effects model does not take among-study assessment stage. Six (15%) studies reported investigating
variance into account, so is deceptively narrow when there the reliability of their screen method, and 11 (26%) studies
is substantial variation across studies. Instead, a 95% interval stated that the inter-rater reliability for the diagnostic
assessment had been investigated. Many studies did not
report refusal rates and reliability, so these covariates could
Box 2: Inclusion criteria not be included in further analyses.

(1) Primary research Description of heterogeneity among studies and


(2) A geographically and temporally defined population summary of prevalence
(3) Cross-sectional study or data, or first phase of a There was clearly wide variation in the prevalence estimates
longitudinal study of typical autism (fig 1) and an increase in prevalence
(4) Defined diagnostic criteria stated for autism or autism estimates over time. The Q statistic was very large
spectrum disorder (Q = 1947.6, df = 36, p , 0.001; I2 = 98.2%), showing that
there was a great deal of variation among the studies. There
(5) Includes individuals under 18 years old
was also a high degree of heterogeneity among estimates of
(6) Initial selection in a wide range of children in the all ASD (fig 2) (Q = 1577.7, df = 22, p , 0.001; I2 = 98.6%).
general population, or in a clinical setting The back-transformed mean of the random effects dis-
(7) Final identification of cases based on clinical or other tribution for studies of typical autism was 7.1 per 10 000
diagnostic assessment of selected children (95% interval for true prevalences: 1.6 to 30.6) and for studies
(8) Published in English, or with detailed summaries in of all ASD was 20.0 per 10 000 (95% interval for true
English prevalences: 4.9 to 82.1).
(9) Peer reviewed paper or conference presentation
(10) Includes prevalence data Investigation of sources of heterogeneity
(criteria adapted from Wing7) Two studies were excluded from the regression analyses:
either the published paper was not available,16 or insufficient

www.archdischild.com
10

Table 1 Summary of prevalence studies of autism spectrum disorders (42 studies)


Typical autism All ASD

Prospective(P)/ Prevalence
Publ. Sample Screen retrospective (R) Diagnostic estimate (per Diagnostic Prevalence estimate
Ref. year First author Country Sample size Area Age (years) screened1 methods assessment criteria used 10 000) (SE) criteria used (per 10 000) (SE)

www.archdischild.com
14 1966 Lotter UK 78 000 Urban 8–10 P Q P Kanner 4.5 (0.76) – –
15 1970 Treffert USA 899 750 Mixed 0–12 C R R Kanner 0.7 (0.09) – –
16 1970 Brask Denmark 46 500 Urban 2–14 S – – Kanner 4.3 (0.96) – –
17 1979 Wing UK 35 000 Urban 0–15 C R P Kanner 4.9 (1.18) Triad 21.2 (2.46)
18 1982 Hoshino Japan 609 848 Mixed 0–18 P L P Kanner 2.33 (0.20) – –
19 1983 Ishii Japan 34 987 Urban 6–12 P L P Rutter 16.0 (2.14) – –
20 1983 Bohman Sweden 69 000 Mixed 0–20 P L P Rutter 3.0 (0.66) Rutter 5.6 (0.9)
21 1984 McCarthy Ireland 65 000 Mixed 8–10 S R R Kanner 4.3 (0.81) – –
22 1984 Gillberg Sweden 128 584 Mixed 4–18 P L P Rutter 2.0 (0.39) Rutter 3.9 (0.55)
23 1986 Steinhausen Germany 279 616 Urban 0–15 S L R Rutter 1.9 (0.26) – –
24 1986 Steffenburg Sweden 42 886 Mixed 0–9 P L P DSM-III 4.7 (1.05) DSM-III 6.9 (1.27)
25 1987 Burd USA 180 986 Mixed 2–18 C L P DSM-III 1.2 (0.26) DSM-III 3.3 (0.43)
26 1987 Matsuishi Japan 32 834 Urban 4–12 P R P DSM-III 15.5 (2.17) – –
27 1988 Tanoue Japan 95 394 Rural 7 P C P DSM-III 13.8 (1.20) – –
28 1988 Bryson Canada 20 800 Mixed 6–14 P Q P DSM-III 1.9 (0.96) Denkla Triad 10.1 (2.2)
29 1989 Ritvo USA 526 514 Mixed 3–17 P L P DSM-III 2.92 (0.24) – –
30 1989 Sugiyama Japan 11 320 Urban 1.5 P C P DSM-III 13.0 (3.37) – –
31 1989 Cialdella France 135 180 Urban 5–9 C L R DSM-III 5.1 (0.61) DSM-III 10.8 (0.89)
32 1991 Gillberg Sweden 78 102 Mixed 4–13 C L P DSM-III-R 7.0 (0.95) DSM-III-R 9.4 (1.1)
33 1992 Ohtaki Japan 35 366 Mixed 6–14 S R P DSM-III-R 13.9 (1.98) – –
34 1992 Fombonne France 274 816 Mixed 9 & 13 C R R ICD-9 4.9 (0.42) – –
35 1993 Herder Norway 50 909* – 1–17 C – – DSM-III-R 5.5 (1.04) – –
36 1996 Honda Japan 8 537 Urban 5 P C P ICD-10 21.1 (4.97) – –
37 1997 Arvidsson Sweden 1 941 Mixed 3–6 P C P ICD-10 31 (12.6) ICD-10 46 (15.36)
38 1997 Webb UK 73 300 Mixed 3–15 P L P DSM-III-R 7.2 (0.98) – –
39 1997 Fombonne France 325 347 Mixed 6–16 C R R ICD-10 5.35 (0.41) ICD-10 16.29 (0.71)
40 1998 Sponheim Norway 65 688 Mixed 3–14 P L P ICD-10 3.8 (0.76) ICD-10 5.2 (0.89)
41 1999 Kadesjo Sweden 826 Urban 6–7 P L P ICD-10 60 (26.87) Gillberg’s criteria 121 (38.04)
42 2000 Powell UK 16 049* Mixed 0 to ,5 S R R DSM-III-R or 16.2 (3.17) ICD-10 33.7 (1.48)
ICD-10**
43 2000 Kielinen Finland 152 732 Mixed 3–18 C R R ICD-10 5.6 (0.61) ICD-10 13.9 (0.95)
44 2000 Baird UK 16 235 Urban 1.5 P Q (CHAT) P ICD-10 30.8 (4.35) ICD-10 57.9 (5.95)
45 2001 Magnusson Iceland 43 153 Mixed 5–14` P C R ICD-10 8.6 (1.41) ICD-10 13.2 (1.75)
46 2001 Bertrand USA 8 896 Urban 3–10 P R P (where possible) DSM-IV 40.0 (6.69) DSM-IV 67 (8.65)
47 2001 Chakrabarti UK 15 500 Mixed 2.5–6.5 P C P DSM-IV 16.8 (3.29) DSM-IV 62.6 (6.34)
48 2002 Croen USA 4 590 333 Mixed 0–12 S R R DSM-III & 11.0 (0.15) – –
DSM-IV
49 2003 Lingam UK 186 206 Mixed 5–14 S R R ICD-10 14.9 (0.89) ICD-10 30.4 (1.28)
50 2004 Tebruegge UK 2 536 Mixed 8–9 P R R ICD-10 23.7 (9.7) ICD-10 82.8 (18.0)
ASD papers
51 2001 Fombonne UK 10 438 Mixed 5–15 P Q (DAWBA) P – – DSM-IV and ICD- 26.1 (5.0)
10 (excl Rett’s)
52 2002 Scott UK 43 472 Mixed 5–11 P L R – – ICD-10 57.0 (3.61)
53 2003 Yeargin-Allsopp USA 289 456 Urban 3–10 C R R – – DSM-IV 34 (1.08)

*Estimated from number of cases and prevalence estimate; Cohort first screened at 18 months, followed up until age 7–8 years; `Data from an older cohort also included in the study, but excluded from these analyses; 1Sample screened: P,
whole population; C, general clinical services; S, specialist clinical/educational services; Screen methods: C, routine checks; L, letter to elicit referrals; Q, questionnaires/interview; R, records (CHAT, Checklist for Autism in Toddlers; DAWBA,
Development and Well-Being Assessment); **ICD-10 used for analysis; DSM-IV used for analysis.
Williams, Higgins, Brayne

copyright.
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Prevalence studies of autism spectrum disorders 11

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Study Study

Lotter, 1966 Wing, 1979


Treffert, 1970 Bohman, 1983
Brask, 1970 Gillberg, 1984
Wing, 1979 Steffenburg, 1986
Hoshino, 1982 Burd, 1987
Ishii, 1983 Bryson, 1988
Bohman, 1983 Cialdella, 1989
McCarthy, 1984 Gillberg, 1991
Gillberg, 1984 Arvidsson, 1997
Steinhausen, 1986 Fombonne, 1997
Steffenburg, 1986 Sponheim, 1998
Burd, 1987 Kadesjo, 1999
Matsuishi, 1987 Powell, 2000
Tanoue, 1988 Kielinen, 2000
Bryson, 1988 Baird, 2000
Ritvo, 1989 Magnusson, 2001
Sugiyama, 1989 Chakrabarti, 2001
Ciadella, 1989 Bertrand, 2001
Gillberg, 1991 Fombonne, 2001
Ohtaki, 1992 Scott, 2002
Fombonne, 1992 Lingam, 2003
Herder, 1993 Yeargin-Allsopp, 2003
Honda, 1996 Tebruegge, 2004
Arvidsson, 1997
Webb, 1997
Fombonne, 1997 0.5 1 2.5 5 10 25 50 100
Sponheim, 1998 per 10 000 (log scale)
Kadesjo, 1999
Powell, 2000 Figure 2 Forest plot of prevalence estimates and 95% confidence
Kielinen, 2000 intervals from studies of all ASD, log transformed (n = 23).
Baird, 2000
Magnusson, 2001
study was on a population or clinic based sample, were not
Bertrand, 2001
Chakrabarti, 2001 significantly associated with prevalence. Urban location gave

copyright.
Croen, 2002 rise to higher prevalence estimates than studies carried out in
Lingam, 2003 rural or mixed locations (OR = 1.90, 95% CI 1.10 to 3.25;
Tebruegge, 2004 among-study variance explained = 53%). Studies that drew
on records of previous diagnostic assessments resulted in
lower prevalence estimates than those which included a
0.5 1 2.5 5 10 25 50 100 prospective diagnostic assessment (OR = 0.57, 95% CI 0.33 to
per 10 000 (log scale) 0.96; variance explained = 53%). Including region of study
provided the model that explained the most among-study
Figure 1 Forest plot of prevalence estimates and 95% confidence variance (variance explained = 61%) (table 3). In this final
intervals from studies of typical autism, log transformed (n = 37). model, using ICD-10 or DSM-IV led to prevalence estimates
three times those using other diagnostic criteria. The odds
information on study methodology was included in the ratio for age was 0.91 (95% CI 0.83 to 0.99), showing that an
English abstract of a Swedish paper.35 increase of one year in the age of the children screened led to
a significant reduction in prevalence estimates. For example,
Studies of typical autism when the odds ratio is taken to approximate a relative risk, if
The associations between study covariates and prevalence prevalence was estimated to be 10 per 10 000 in a sample of 5
estimates of typical autism from univariate meta-regression year olds, it would be expected to be around 9.1 per 10 000 in
analyses are shown in table 2. Taking account of the age of a sample of 6 year olds. Studies in Japan gave rise to
the children, for example, explained 23% of the among- prevalence estimates that were 3.6 times those in North
studies variance. America.
Diagnostic criteria and decade of publication were the
covariates that explained the most variance among studies in Studies of all ASD
the univariate analyses. These two covariates are collinear The associations between study covariates and prevalence
and it was not possible to include both in a multivariate estimates of all ASD from univariate meta-regression
model. The diagnostic criteria used were entered first into the analyses are shown in table 4. Only three covariates were
multivariate model since this was considered to be more significantly associated with the prevalence estimates: age of
directly related to variation in prevalence estimates than the children screened, urban or rural study location, and the
decade of publication, which is a proxy for all time varying diagnostic criteria used. The screen method used was of
covariates. The binary categorisation of diagnostic criteria borderline significance. Of these, diagnostic criteria explained
was used, as it was not possible to use multiple categories of most among-study variance, and was therefore included in
diagnostic criteria in a multivariate analysis with so few the multivariate analyses. Each of the other covariates was
studies. Age of the children screened also explained much introduced into the model in turn to form models with two
among-study variance, and was entered next into the model. covariates. As in the analyses of studies of typical autism, as
Models with three covariates were constructed which decade and diagnostic criteria were collinear, only the
included age, diagnostic criteria, and each remaining covariate for diagnostic criteria was included in further
covariate in turn. Screening method used, and whether the analyses. When adjusting for diagnostic criteria, the only

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Table 2 Results of meta-regression of studies of typical autism, univariate analyses (n = 35)
Categories of covariate Variance
Covariate (first listed used as baseline) No. studies Odds ratio 95% CI (odds ratio) p value t2 explained (%)

No covariates 35 – – – 0.98 –
Age Mid-point of age range 35 0.84 0.75 to 0.93 0.002 0.75 23
(continuous variable)
Decade 1960s and 1970s 3 1.00 – – 0.58 41
1980s 14 1.80 0.68 to 4.81 0.24
1990s 9 4.26 1.52 to 11.94 0.006
2000s 9 6.42 2.29 to 17.99 ,0.001
Region* N. America 6 1.00 – – 0.85 13
Japan 7 3.19 1.14 to 8.94 0.03
Europe and Scandinavia 22 2.05 0.87 to 4.85 0.10
Area Rural/mixed 24 1.00 – – 0.86 12
Urban 11 2.10 1.07 to 4.14 0.03
Sample screened Population based 21 1.00 – – 0.88 10
Clinic based 14 0.54 0.28 to 1.03 0.06
Screen method Routine checks 6 1.00 – – 0.77 21
Letter for referrals 13 0.28 0.12 to 0.68 0.005
Questionnaires 3 0.45 0.13 to 1.62 0.22
Records 13 0.53 0.22 to 1.27 0.16
Assessment Prospective 23 1.00 – – 0.95 3
Retrospective 12 0.73 0.37 to 1.46 0.38
Diagnostic criterion 1 Not ICD-10 or DSM-IV 21 1.00 – – 0.64 35
ICD-10 or DSM-IV 14 3.32 1.89 to 5.81 ,0.001
Diagnostic criterion 2 Kanner 5 1.00 – – 0.54 45
Rutter 4 1.38 0.51 to 3.71 0.53
DSM-III 8 1.95 0.84 to 4.57 0.12
DSM-III-R 3 3.29 1.13 to 9.58 0.03
ICD-9 1 1.82 0.37 to 8.85 0.46
ICD-10 11 5.10 2.29 to 11.47 ,0.001
DSM-IV 3 7.17 2.46 to 20.91 ,0.001

*Region = North America: USA and Canada; Japan; Europe (UK, France, Germany, Ireland) and Scandinavia (Denmark, Sweden, Norway, Finland, Iceland).
Sample screened = whole population versus clinic based (general clinical services and clinic specialist services).

Table 3 Multivariate meta-regression results, for studies of typical autism (n = 35)*

copyright.
Covariate Odds ratio 95% CI (odds ratio) p value

Diagnostic criteria Not ICD-10 or DSM-IV 1.00 – –


ICD-10 or DSM-IV 3.36 2.07 to 5.46 ,0.001
Age (years) 0.91 0.83 to 0.99 0.03
Region North America 1.00 – –
Japan 3.60 1.73 to 7.46 0.001
Europe and Scandinavia 1.67 0.92 to 3.02 0.09
Intercept 5.1561024 2.0661024 to 1.2961023 ,0.001

*As an example, to estimate the prevalence of typical autism in 8 year old European children using ICD-10, take
10 0006(x/(1+x)), where x = 5.156102463.3660.91861.67, that is, a prevalence of 13.6 per 10 000.

covariates that were significantly associated with the and 20.0 per 10 000 for all ASD are slightly lower than those
prevalence estimates were the age of the children screened estimated previously at 8.7–10.0 per 10 000 and 27.5 per
(variance explained = 50%) and urban or rural study location 10 000 respectively.1 3
(variance explained = 53%). Both these models are presented The covariate most strongly associated with prevalence
(table 5). Using ICD-10 or DSM-IV gave rise to prevalence estimates for typical autism and all ASD was the diagnostic
estimates that were over twice those in studies using other criteria used. This association has been recognised pre-
diagnostic criteria. When including age in the model, an viously.2–4 The time variation in prevalence is so closely
increase in the age of the sample by one year was associated linked to changes in diagnostic criteria, the two could not be
with a fall in prevalence by a factor of approximately 0.85, examined separately. Furthermore, it was not possible to
taking the odds ratio as an approximation of a relative risk. account entirely for the effect of the diagnostic criteria on the
Alternatively, when including study location, studies in prevalence estimates as the ICD-10 and DSM-IV diagnostic
urban areas gave rise to prevalence estimates over 2.5 times schema leave some scope for variation in their interpretation
those in rural or mixed urban and rural areas. and application.
The age of the children screened was strongly associated
DISCUSSION with the prevalence estimates. Manifestations of ASD may be
Main findings more obvious in younger children. Alternatively, some
As expected, a large amount of variation in prevalence across screening methods may be more sensitive for younger
studies was found by graphical representation of estimates children. Methods of screening were found to be significantly
and by indices of heterogeneity. Despite this wide variation, associated with the prevalence estimates in the univariate
pooled estimates are useful to indicate the public health analyses of typical autism, but not after adjusting for the age
burden of the disorder. The study variation is reflected in the of the children screened.
very large intervals on the summaries of overall prevalence. The multivariate model that explained most among-study
The estimates of around 7.1 per 10 000 for typical autism, variance in studies of typical autism included the region

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Prevalence studies of autism spectrum disorders 13

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Table 4 Results of meta-regression of studies of all autism spectrum disorders, univariate analyses (n = 23)
Categories of covariate Variance
Covariate* (first listed used as baseline) No. studies Odds ratio 95% CI (odds ratio) p value t2 explained (%)

No covariates 23 1.01
Age Mid-point of age range 23 0.82 0.72 to 0.94 0.005 0.74 27
(continuous variable)
Decade 1960s and 1970s 1 1.00 – – 0.43 57
1980s 6 0.29 0.07 to 1.19 0.09
1990s 5 0.93 0.22 to 3.94 0.92
2000s 11 1.75 0.44 to 6.89 0.42
Region N. America 4 1.00 – – 0.77 24
Japan 0 – – – – –
Europe 10 1.99 0.70 to 5.58 0.19
Scandinavia 9 0.72 0.25 to 2.05 0.54
Area Rural/mixed 17 1.00 – – 0.86 15
Urban 6 2.44 1.02 to 5.81 0.05
Sample screened Population based 14 1.00 – – 0.97 4
Clinic based 9 0.66 0.29 to 1.54 0.34
Screen method Routine checks 3 1.00 – – 0.72 29
Letter for referrals 9 0.31 0.10 to 0.98 0.05
Questionnaires 3 0.76 0.19 to 3.03 0.69
Records 8 0.93 0.30 to 2.97 0.91
Assessment Prospective 14 1.00 – – 0.96 5
Retrospective 9 1.52 0.66 to 3.49 0.32
Diagnostic criterion 1 Not ICD-10 or DSM-IV 9 1.00 – – 0.69 32
ICD-10 or DSM-IV 14 3.08 1.52 to 6.25 0.002

*Too few studies relative to the number of categories in diagnostic criterion 2 (criteria separately) were available to include this covariate in the analysis.

Table 5 Two multivariate meta-regression models for studies of all autism spectrum
disorders (n = 23)
Covariate Odds ratio 95% CI (odds ratio) p value

Model 1—including age


Diagnostic criteria Not ICD-10 or DSM-IV 1.00 – –

copyright.
ICD-10 or DSM-IV 2.61 1.40 to 4.85 0.003
Age (years) 0.85 0.85 0.76 to 0.96 0.006
Intercept 1.4561023 1.4561023 3.2561024 to 6.4561023 ,0.001

Model 2—including study area


Diagnostic criteria Not ICD-10 or DSM-IV 1.00 – –
ICD-10 or DSM-IV 3.48 1.92 to 6.33 ,0.001
Area Rural/mixed 1.00 – –
Urban 2.85 1.47 to 5.53 0.002
Intercept 2.0361024 7.1561025 to 5.7361024 ,0.001

studied, with studies from Japan having significantly higher method relied on records, these may have been more
estimates than North American studies. This could be due to complete in urban locations. If the screen method used
other study factors. For example, a higher proportion of the referrals from clinicians, it is possible that a higher
Japanese studies were from urban areas (4/7 (57%) studies) proportion of children were known to services in urban
compared to those in North America (1/6 (17%) studies). All locations. There may have been different diagnostic practices
the Japanese studies used prospective diagnostic assess- in urban locations where staff were more likely to be
ments, and all but one drew on whole population rather than employed at specialist healthcare centres than in rural
clinical samples. Due to the imposed limit of three covariates locations. It is easier to access the population in urban
in the model, it was not possible to adjust for further locations, and response rates may have been higher, but data
potential effect modifiers. Countries differ in their diagnostic on response were too limited to investigate this.
practice both in their theoretical background and their
training procedures for healthcare workers. This may, in Limitations and recommendations for future research
part, account for between-region variation in prevalence. Publication bias was not investigated in this review, as funnel
In an alternative model for typical autism, when adjusting plots were not considered appropriate due to the large degree
for age and diagnostic criteria, studies including prospective of variation across studies. It is unlikely that the set of papers
diagnostic assessments gave rise to higher prevalence published is biased with respect to prevalence reported.
estimates than those using retrospective records. This may However, it is possible that some studies were not identified
be linked to the use of different diagnostic methodology at in the searches if they were not published in mainstream
different times. Alternatively, an assessor taking part in journals. There may have been some time lag bias, with
prospective research studies might observe children more smaller studies, or studies with unremarkable results, coming
closely for symptoms of ASD. through to publication slower than larger studies.
When adjusting for diagnostic criteria, urban location was Of the papers identified for detailed examination, five
also observed to be associated with higher prevalence potentially eligible studies were excluded as they did not have
estimates for both typical autism and all ASD. If the screen a detailed English summary or were not peer reviewed. There

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14 Williams, Higgins, Brayne

Arch Dis Child: first published as 10.1136/adc.2004.062083 on 29 April 2005. Downloaded from http://adc.bmj.com/ on October 10, 2021 at UK NHS and HE Athens Access. Protected by
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